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Unedited Interview Texts This is a long one folks, (over 16,000 words from 19 women) but worth the traul for pure inspiration. Thank you once again to every woman whose words are here. You are all absolute stars!
Anita, 32, Lincoln: 1. Diagnosis: I first started having symptoms which I now know were Endo when I was 14/15 years old (1983/4). The male GP explained that all women have painful periods and put me on the combined contraceptive pill in 1986. I then started having the symptoms even though I was still on the Pill in 1992. I saw many male GPs who changed the brand of pill saying again that as a women I should just put up with it. I eventually saw a female GP who said straight away that I had Endo and referred me to a Gynae Consultant. This was mid 1994. 2. Treatments: I was first put on the combined contraceptive pill (although for the wrong reasons!) which is sometimes used as a treatment due to it`s action to suppress ovulation - ineffective long term. I had a Laparoscopy and D&C then I was given the nasal spray Synarel in 1994 which put me through the early menopause - this was awful. Hot sweats/flushes, depression, extreme tiredness, and tempers - effective short term. I was then recommended to get pregnant as this could help, the treatment had helped with fertility and I had my daughter in Dec 1995 - partially effective. In 1998 I was rediagnosed following laparoscopy and had a LUNA (Laser Uterine Nerve Ablation) to attempt to curb the pain. Unfortunately due to the position of my womb this could only be done on the left side - effective partially. I now rely on pain relief and a good husband. 3. Endo symptoms: Constipation, bloated abdomen, painful/cramping back and front of thighs, very painful breasts and under arms, abdomen as if someone is tying it in knots and then wringing it out in very hot water! The painful abdomen always starts around 0700 - 0800 in the morning. 4. Relief: The only relief is anti-inflammatory analgesics such as Ibuprofen. A microwave lavender heat pad, hot baths and lying in a strange position until the cramps subside enough. Then movement such as walking or housework. This does not relieve all the pain but it helps to make it bearable. 5. Affect to career/education: I used to have to take time off for really bad attacks, but only a day or two. I work when I have to now and only night shifts, so my attacks are just about bearable while I am on shift. I used to have the attacks at midnight and that wasn't very suitable, I just had to go to work shattered. 6. Emotional health: I dread the time when my period is due. At the moment I am not on any hormonal medication, against my consultants advice. He wanted me to stay on the pill, but as I am a smoker and aged 32 I do not think that this would be safe. Therefore my cycle is very unpredictable, I can be on for 10 - 14 days or more with only a week off. I can never be sure when I am due on. I get very grumpy and bad tempered and very sensitive. I can cry or shout for no reason. When the pain is at the worst I tend to shut myself away, because no-one really understands the pain and they seem to think that it`s only period pain and I should get on with it. My husband tries to be understanding and sympathetic, but that seems to make it worse. 7. Fertility: I originally sought the female GPs advice due to my inability to conceive. I had come off the pill in 1993 and was trying to get pregnant. I was also experiencing pain on intercourse. I was still having the usual Endo symptoms as well, but had put them down to secondary dysmennorhea (period pain) as I had been told numerous times by the male GPs. When I was referred to the Gynae Consultant he explained that nobody really knew whether Endo caused infertility or vice versa. After the Synarel treatment he advised me to try to get pregnant and luckily I succeeded in 1995. However since then I have had no luck. Fingers crossed and still trying. My daughter is five years old now. 8. Comments to women with symptoms: Get as much information about Endo as you can and then go armed to your GP. Persevere until you get referred to the specialist. Do not rest until you get the correct tests, even change your GP if necessary. 9. Comments to newly diagnosed women: Don`t feel disheartened, it is not the end of the world. Get information (the web site is excellent, I wish it had been around when I was diagnosed) get in touch with other women who have Endo. There are treatments available, lots more recently. Don`t get pushed into a hysterectomy, there are plenty of less radical treatments available before you have to resort to that. I actually requested one when I was diagnosed because I couldn't cope with it any more. The consultant was wonderful and refused saying at 23 I was too young. He gave me hope. New treatments are being pioneered and all avenues should be explored. Doctors are becoming more aware of Endo now and aren't putting it off as "women `s things" that should be put up with. Patients are now able to have their say and won`t put up with being pushed aside. Stand up for your right to be treated.
Sue, 34, Sheffield: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I was diagnosed in 1998- after particularly acute attack but I feel that I have always had period problems and I was diagnosed with IBS at 18 which I knew was cyclical but the doctors siaid that it is coincidence erm!!!! Between surgeries I have been told that I could not have endo back so quickly- which was wrong- after waiitng months for them to do something they have found endo. With my acute attack I was hospitalised 3 times in 6 weeks with suspected appendictsis. The first hospital missed a 6 inch cyst on my right ovary and I was told I had had food poisoning, bowel, infection,renal infection, stomach bug, PID. I finally paid to see a gyn privately and on only touching my stomach he could tell that it was an ovarian problem and the scan showed a cyst 2) What treatments have you had/been offered and how did you find them? 2 laporatomies and cysectomies on right ovary, second one also had removal of endo from other areas. AFter second surgery I had danazol- gave me headaches, wieght gain depression and no relief of symptoms because my periods did not stop. Then tried zoaldex which was hell- I was vomiting everyday- docs told me it could not be drug that was problem and I refused 3rd treatment. Pain came back with another ovarain cyst - so I then had laposcropy with right oophrectomy adhesin and endo removal from just about every part of my pelvis. Pain came back in few mths tried syneral- ended up in hospital after vomiting for 5 days- with several dehydration etc I was very ill- so no more drugs for me. Pain has returned and only option I have is further laps or hysterectomy I was offered one last time I meet my surgeon and I declined. Currently having IVF treatment. 3) Describe what it feels like when you are having an endo attack. Sharp stabbing pain, like someone is putting a knife up thru vagina into my body 9hope this is not too graphic for you). I get an awful pulling pain which feels like some one is trying to pull my insides out- I think this is adhesions. I throw up- I shuffle around like an old woman, I feel really old and useless 4) What have you found can give you relief from an endo attack? Volterol did really help but I have taken so much of it it does not do its job so well. So I have changed to tyles- which makes me drowsy, nauseated and constipated. I use a TENS machine which helps when pain killers do not do their job but I hate being wired up to it. I have a wheat bag which I find really comforting. Being warm and in baggy clothes really helps 5) How has having endo impacted on your career/education? I will lose my job in August because of this disease. I am a research fellow at Sheffield Uni- I have worked extremely hard to get to where I am- PhD, post doc training, 12mths on the dole while I searched for funding. I finally get myself estabished within my field- which is difficult for women and I get this disease. I have had so much time off sick during my last 3 years research contract- it will not be renewed and I lose my job. The dept will not offer me a permanent position because of my sick record- nor with any other uni- great eh!! 6) How has having endo affected your emotional health? At times I have felt desperate- there is not a facet of my life that endo has not changed- my health, my fertility,my career my relationship with my husband, social life- holidays. It even meant I missed my own wedding reception and honeymoon. I had my first laporatomy 3 weeks before my wedding and I was really ill on the day. I have had to cancel 2 holidays at the last minute. I feel like I have lost control of my life it is now controlled by my endo. I had counselling because I felt so overawed by the whole thing and I feel better about it now but there are many days when things get on top of me. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) YES, we got married after being together for 14 years, because we decided the time was right for kids and for us we wanted to be married for that. Just before wedding I was diagnosed so we started trying to concieve as soon as I was well enough after my surgery. That was 3 years ago. It took us 2 years to be referred to fertility clinic. In November when endo returned we were placed at the top of IVF list as priority case. However the hospitals in sheffield are changing and it meant 6-12mth wait. So we decided to go for private treatment. Tests have shown that due to the removal of one of my ovaries the remaining one is failing and I will be a poor responder in IVF. We decided to give it a go anyway, so I am into the cycle now 3 days in it is hell having to inject yourself every day and I have huge reaction areas on my legs from where I have to inject myself. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Do not give up, hassle your GP until they send you to see someone- if necessary pay to see an experienced consultant 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? Become an expert in this disease- that is the only way to get the right treatment. There is no cure so you have to decide whether the risks involved in the treatment be that surgery or drugs are worth it for you. Do not be fobbed off by doctors they are paid to do their job and all you are asking is that they do it. Believe in yourself- whatever you are feeling is real and do not let anyone tell you different. Take care of yourself- diet, rest and exercide are all important. Take stress out of your life.
Christine, 18, St Helens: i hope that i can help i am so glad that somebody is trying to raise the awareness of endometriosis.I have suffered with endo pains from the age of about 13,14. At the age of 16 i was rushed into hospital with suspected appendicitis but after an operation that investigated they found a ruptured cyst on my right ovary and a small one on my left ovarie the ruptured cyst was removed and i was informed that they suspected i had endometriosis and i was referred to a gynaecologist for a laproscopy to investigate further after a laproscopy they informed that i had endometriosis and a lot adhesions in both of my fallopian tubes. I had quite a few of negative responses from the medical profession as i had suffered with agonising pains in my stomach for years and had been rushed in and out of hospital with various things and nothing had been wrong eventually they classesd me as a hypercondriact. I also found it very annoying as when i was diagnosed at the age of 16 the gynacologists where not very helpful they provided with no information and they where pretty ignorant with me. i felt like they thought i was stupid as i was so young. The treatment i have had are the Zoladex injection for 6 months and then my gynacologist put me onto the pill this was a ridiculous time i my gynacologist referred me to my Gp and my gp did not know which pill to prescribe me as they where pretty unaware of endometriosis they tried to contact my gynacologist but he did not reply to any of my gpos faxes i was on this treatment for about 8 months but was taken into hospital again in agonising pain i could hardly walk or stand up straight after a few investigation they decided to change my treatment back to the zoladex injection and hrt i have now come of the injection, i have been of it for over 3 months and have had no sign of a period which is scaring me a bit now as nobody is giving me any information or answers. When i have an endo attack the pain is agonising i can't usually get out of bed i just have to curl up in a ball it feels like somebody is stabbing me inside it is always a sharp pain that comes and goes. The only relief i get and this isn,t full relief is to get into bed with a hot water bottle and curl up into a ball.my gp also gave me some voltrol tablets and told me to take theses and co codamol when the pains get really bad this just takes the edge of the pains for a short while. As i am also a student at university training to be a nurse i have found this has had an impact on my study as when the pains are really bad i am not able to concentrate on anything. The other problem i have found is that it is causing a problem with my attendance when i ahve severe pain i try not to let it affect me and get the worst of me though otherwise i would just end up depressed if i did. Endo has effected me emotionally as i can get very depressed and emotional due to it. i would also like to say that i felt the gynacologist are not much help when i was first diagnosed i asked if they thought i could still have children one said they didn't know and the other basically told me to go and have a baby then as my chances of having children would be less as i got older, i found this pretty pathetic as i was only 16 and pretty scared of this issue.
Janine, 29, Bolton: 1/ symptoms started at the age of 17,that I can remember although I had problems with periods on and off from them starting at 13. Visited doctors from 17 and was given antibiotics and no help until I was 23,when I was finally referred to a specialist who gave me a scan and found nothing. Then later a laperoscopy, where he found endometriosis patches on my ligaments, and was informed I had a reverted uterus. Upon finding the endometriosis I was then informed it could not be giving me any pain as it is only mild and my symptoms where due to irritable bowel syndrome. He was a very arrogant man and treated me like a hypochondriac, I was then sent away with tablets and written off. 2/ well I have had three children, which they said would cure me,(although that is not the reason I had them..) I have been on tablets for irritable bowel syndrome which did nothing. then had an 8 month course of hormones (from specialist) which turned me into a mad woman, terrible mood swings and weight gain. They also did not help with the pain but eased the amount of blood I was losing when having a period (I no longer have to sleep on a folded bath towel and use many tampons and sanitary towels at the same time) I have also been on microgynon,a birth control pill, which yet again did nothing but aggravate things and give me more pain and more symptoms to contend with. also I tried danazol but didn't take it for long as it seemed to be counteracting my other tablets. 3/ when having an attack of endometriosis, it starts the week before my period and builds up each day until the first day of my period, which is then like walking around with a knife stuck inside me and each step I take and any movements I make dig this invisible knife deeper into my insides twisting and turning as it goes. a simple trip to the toilet leaves me in excruciating pain, sweating and feeling sick to my stomach just because I need to pass a bowel movement, or have a wee. one night when having an attack I went to the loo and woke up on the bathroom floor looking like I had just done a round in the boxing ring with mike Tyson, but at least whist unconscious on the floor I couldn't feel the pain. this then eases as the days go by only to reappear days later ready to attack again when I ovulate. 4/ I have yet to find anything that can help whilst having an attack, I have been told to take paracetamol, but I don't even bother as it has no effect at all. other than that I try not to move too much, and find curling up in a ball with something warm on my back and stomach relaxing. 5/ endometriosis has stopped me from applying for physically demanding jobs, but for the most part I have been a house wife and mother and this has affected the patients I have had with my children and sometimes prevents day trips and such like because of the pain and the fact that I am just drained of all my energy, it is as if someone has a straw and is just sucking the life out of me.and somedays I could just cry because I know I have to carry on. 6/ my emotional health is not much better than my physical, I suffer from depression, and anxiety, resulting in panic attacks which I am currently trying to overcome. I am noticing though that my panic attacks seem to be worse with my cycle.(although I could be just clutching at straws there.) 7/ I am lucky that I have not had any trouble in conceiving. 8/ if you suspect you have endometriosis, visit your doctor and ask to be referred don't let them fob you off, if you ask to be referred they cannot refuse. and stick to your guns don't let someone tell you its in your head and you cannot be in pain it is your body you have lived with it all your life and you know what you should be feeling not them....be strong. 9/ find out as much as you can about treatments, so you are prepared when you have options, its so easy to take treatments that aren't going to help because you don't know of any others, and remember when faced with a gynaecologist who thinks he is god himself remember he is probably married and has a wife at home who moans at him for leaving his underpants on the floor, they are only human. 10/ just that listen to your body, if you are having pain it is your bodies way of letting you know something is wrong.
Jo, 31, London: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? A) I have had bad period pains since I started around 15. Was put on pill at 16 but was diagnosed at 28. I am now 30. I did not seek medical advice about this (other than when I first started and was put on the pill) Until I was 28. I went to my doctor and he said straight away that it may be Endo. I went to the hospital for a scan but nothing showed up so they put me in for a laparoscopy and that's when they found it. I also had laser treatment at the same time. So I guess I was quite lucky as my Doctor was quite on the ball and open minded. 2) What treatments have you had/been offered and how did you find them? A) As I said I had Laser treatment. I felt that this only gave me a few months respite. Other than that I have tried the mini pill which was terrible I was bleeding every 10 days and the pain was not reduced at all. I am now seeing a herbal practitioner who prescribes me a mixture of herbs and suggest diet changes which I am following and am very please with the results so far. I would recommend Diet as a must and defenantly Herbal or alternative remedies. 3) Describe what it feels like when you are having an endo attack. A) I have around 2-3 really bad day's. I pain in my womb, bowels, back and down the inside of my thighs. The pain is how I would imagine really bad labour to be (I have never had a baby) It is like period cramp but only much much worse. It actually feels like the inside is being twisted like when you wring out a flannel or something. I also get very lethargic. I am totally useless I cannot speak or do anything as I just don't have the energy. When you have such a high level of pain you release endorphins which can make your head feel drugged. I also have to take such a mixture of extremely strong pain killers and that also makes my head feel spaced out and sometimes nauseous. When that pain is at its worse I can't imagine it being any worse I feel like the next level of pain would involve me passing out. 4) What have you found can give you relief from an endo attack? A)I take Voltrol suppositories, along with Buscopan,Paracetamol,and sometimes Tramadol. Sometimes I am still bed ridden and useless even with this amount of pain relief but as I said the Diet and Herbs seem to be making a difference and I am really pleased so far. I cannot stress how important what you eat is in relation to the Endo. Its all to do with your hormones and certain foods and drinks affect your hormone levels so it really is worth looking at diet and lifestyle. It really doesn't have to mean living boring dull lives either, just getting the balance right. 5) How has having endo impacted on your career/education? A)It has had huge affect on my life overall. I am no longer reliable! This really upsets me more than the anything really. I know that for one week out of every four I will be out of action and although I know roughly when it will be I can not be accurate. I do not plan any thing socially or otherwise and I try to warn work as much as I can but Its still only a rough idea. I am lucky I have understanding employers but there are certain jobs I just couldn't go for due to my unreliability. When I think about getting a new job I wonder who would want to employ someone who is going to be off work every 4th week. I am self employed so when I don't work I do not get paid this is a huge stress to me and my partner as we struggle when I lose the money, but I can't think of a solution. I used to be an Actress but I don't go for Acting jobs now because as the saying goes the show must go on & I know that I just wouldn't be able to. 6) How has having endo affected your emotional health? A) I get very upset about the whole thing and sometimes feel very resigned, like "what's the point" but I try to be positive and keep looking for improvements. It effects so much of your life. My friends get let down, my employers, My Husband, It effects our love life as its painful during intercourse and has created a sexual problem. My Husband & I went to a sexual therapist for a while because it had become a big issue for me & I was scared to have sex. So I get upset and very stressed as I feel I admitting everyone down as well as losing lots of money. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) A) No my ovaries are fine (had ultra sound) I have never tried getting pregnant. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? A)I would suggest avoiding any surgery as it can have its own side affect, but to try and see an alternative practitioner for example a Herbal practitioner who can advise on diet as well as remedies. This canmanage the endo. I would go to my doctor and ask them to refer me to an alternative practitioner there are many. and My suggestion is not to put up with being palmed off by any one. Don't put up with the pain. If they suggest something and it doesn't work go back and ask for something else. I see myself as a work in progress and if this does not work I will keep going until I find something that does. Try not to let it run your life. We have to be empowered around this as it can be very disempowering. And do not resist it either. If you are in pain be in pain do not try to carry on like you are not. Scream and shout if you have to because you must express yourself, Self expression is good for you. Don't be a hero 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? A) Yes all the above and get in to communication with other endo sufferers. As soon as I knew I joined the endo soc & it made such a difference to have some one listen. You feel so alone with this condition as its not high profile but there are 1 in 10 women with endo so seek them out and get support. It makes a big difference to speak to someone who understands what you are going through and not say "Endo.... What's that?" 10) Do you have anything else to say that you feel might be relevant? A) Yes just don't give up. Be heard, and surgery is not always the answer. They say the only reason you really must have a hysterectomy is if you have cancer and only 10% of women have a hysterectomy due to Cancer that means 90% of women are having there wombs removed for other reasons and not all of then are valid, that is a very high percentage. Some of which could have been avoided. Try everything else first.
Lisa, 26, Otley: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I was diagnosed in September 2000. I had been taking Ponstan since the age of 13. My first laparoscopy was in 1992 when I was 18, but no endo was found. I then pestered my GP's to do something and in January 2000 they eventually decided I should have another laparoscopy where I was diagnosed with endo and polycystic ovaries. 2) What treatments have you had/been offered and how did you find them? So far I have been given Ovran 30 (contraceptive pill), which I am taking continuously with a 7 day break every three packets. This has however made me worse but my GP wont allow me to stop taking it as my Consultant prescribed it. 3) Describe what it feels like when you are having an endo attack. Most days I have pelvic pain, but about twice a week I get a sharp stabbing pain in the small of my back which feels as if someone has just kicked me and winded me. This pain usually causes me to collapse, but never stays for more than 10 minutes. I also have painful bowel movements, pain during intercourse and an aching pain in my coccyx when I sit. When menstruating the pain can be unbearable. For the first 4 days I get pain which feels as if someone is pulling my insides out. The next 10 days is just bad period pain. 4) What have you found can give you relief from an endo attack? Not alot. The pelvic pain most days is eased with mefenamic acid and co-codomol, but doesn't completely go. For the pain during a period nothing seems to help. Unfortunately my GP wont prescribe anything stronger than what I take, so I just have to live with it. 5) How has having endo impacted on your career/education? All the way through University I was taking mefenamic acid for the pain, but was also having problems vomiting daily. This effected my final year and the outcome of my degree, as my tutors weren't very sympathetic. My attendance record at work isn't wonderful. I tend to take between 2-4 days off a month when menstruating and have taken a number of weeks off due to illness (catching any cold anyone brings into the office) over the last few years. I have noticed I seem to catch everything and it takes twice as long to get rid of it. 6) How has having endo affected your emotional health? Before I started treatment I was having difficulty with mood swings and these have become much worse since starting Ovran 30. Also the lack of sexual Intercourse effects my marriage, but luckily my husband is very supportive. After days and days of severe pain I do get a little depressed, but have not mentioned this to my GP as I know of women who have and have been given anti-depressants. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) I do not want children so this has not been investigated. However polycystic ovaries cause infertility anyway. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? To keep pestering. I have walked away from Doctors surgeries so many times in tears from what they have said to me. If I had believed them I would still not be diagnosed. I am sure most women have been told the things I have, how I am imaging everything etc and wasting THEIR time. 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? Being newly diagnosed, I don't really know how better it can get. 10) Do you have anything else to say that you feel might be relevant? It would be nice if we were given more information on the disease. If it wasn't for the internet I would still be pretty much in the dark. Also, I feel as if the speed that treatment is offered on diagnosis is very poor.
Rachel, 26, Shepherd's Bush: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I suffered painful, heavy periods from the age of 12, I would spend a couple of days a month in bed because of the pain. About two years ago, the pain became almost constant, and I'd have bleeding for weeks on end. I moved to north London in October 1999 because of my job, and I got worse and worse, some days I couldn't get out of bed because of the pain. My new GP sent me for an ultrasound scan, which came back normal. She gave me painkillers and told me to "get on with things". I returned several times as I couldn't cope with the pain, not ONCE was I offered a consultant appointment. At one stage she offered to prescribe me anti-depressants as by now she was convinced that the pain was "all in my head". I moved to west London and changed GP's. My new GP referred me to a consultant at Hammersmith hospital straight away, and after my first appointment a couple of months later, I was given a laparoscopy, and fairly severe endo was diagnosed in Dec 2000, along with polycystic ovaries. I felt so relieved that my condition finally had a name, and I wasn't going mad! 2) What treatments have you had/been offered and how did you find them? I have been on Provera (medroxyprogesterone acetate) for three months, and my pain has improved by about 70%. Unfortunately I have suffered side-effects such as bad mood swings, hair loss, greasy skin and occasional bleeding. I have a consultants appointment at the end of March, and he says he may try me on Zoladex next if things don't improve. 3) Describe what it feels like when you are having an endo attack. Like I'm being stabbed in the side with a knife. This can be accompanied by dizziness and vomiting. The pain literally takes my breath away and appears with no warning. After the stabbing pains have subsided, I normally have cramping pains which can last a couple of days. 4) What have you found can give you relief from an endo attack? I have been prescribed strong painkillers (co-dydramol and Voltarol), which I don't like taking as they make me very sleepy. They give some relief, but usually I have to go to bed with a hot water bottle and painkillers, and stay there until I feel well again. 5) How has having endo impacted on your career/education? I usually have to take a couple of days off a month because of the pain, however my boss is very understanding. I feel I am very lucky in this respect as some employers might not have the attitude that mine has. 6) How has having endo affected your emotional health? Before I was diagnosed I used to cry and cry because I didn't know what was wrong with me. At one stage I managed to convince myself that I had cancer and nobody would take me seriously. Obviously, because of the pain I was suffering from depression. Since my diagnosis I have been 100% more positive, even on bad days when I'm in a lot of pain because I know what's wrong with me. Sometimes I get really fed up and think "why me?", but have researched the condition on the internet, and spoken to women via endo.org chatrooms who have literally been to hell and back because of endometriosis. Their courage gives me hope, and aspirations for the future that a cure can be found for the disease that (particularly for younger women like myself who are childless) doesn't involve a hysterectomy. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) I had a miscarriage in November 1999, whether this was connected to my endo and/or polycystic ovaries I don't know. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Never give up. People I have spoken to have generally found women GP's more sympathetic and more likely to refer you for investigative treatment, but as I found out with my old GP this isn't necessarily the case. Be informed. If I'd have known what endometriosis was before I was diagnosed, I would have offered it as a possibility to my old doctor and would have asked to be referred to a hospital. Keep a diary of your symptoms to show your doctor - this is what made my new GP sit up and take notice. 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? I'm newly diagnosed, so all I can say is do your research and find out as much as you can about the condition. I found talking to other women via internet chatrooms a real help. 10) Do you have anything else to say that you feel might be relevant? Just to keep positive. I think raising awareness of endo is a very good idea, when I was diagnosed I had no idea of what the condition was. Neither had my friends, family or boyfriend. They are all wonderfully supportive of me now they know what is wrong with me. Because of the nature of endo, it has been swept under the carpet because it comes under the term "women's problems". However, if it was raised to the public's awareness like, for example, breast or cervical cancer, people may not suffer needlessly like I did.
Anon, London: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I had endo with my first period around 15. I was given the pill (without any examination), and that kept the symptoms relatively at bay for years. When I found out how damaging the pill can be, I stopped and approx 1 year afterwards got really, really bad pain again. It took approx a year for the diagnosis to be made from this point. But my original problem had started ca 11 yrs before. I was told at the morning after my operation that confirmed my worst fears - endo - by the senior registrar that I had SEVERE endo. I burst into tears - she then said she didn't understand why I was crying, they knew what it was and could treat it now. (With Xoladex of course...). She got very stroppy when I refused her treatment. 2) What treatments have you had/been offered and how did you find them? I was offered Zoladex, which I refused. (Knowing a bit about hormones by then). I spoke to friends and was recommended acupuncture (I was touting for which alternative to try). I have used acupuncture with great success for 1 1/2 yrs, and also chinese herbs and homeopathy. 3) Describe what it feels like when you are having an endo attack. Haven't had one for a while, but I do remember!! There were different types. There is one - which is what I call period pain - which feels heavy, dragging, low, sad. You can feel the muscles of the womb contract and the pain comes in waves with the muscle spasms. These were the most bearable ones, and also easiest to find painkillers for. There was the ovulation pain. It felt like a basketball had to come down through my tubes. It felt like something was being squeezed to bursting point. Sometimes accompanied by sharp pains, like someone is stabbing you from the inside. And - then there was the ENDO pain. This would come on suddenly (couple of minutes from perfectly fine to jibbering wreck). It was sharp, stabbing, all encompassing. Sometimes it felt like somebody had pushed a huge knife up the vagina, and was moving it round my insides. No painkillers would help. It felt like all the bits were being pulled and pushed (violently) around. I would often beg to faint, although I never did. I thought I would die if things got worse, I threw up. I also had pain with intercourse, and going to the toilet, and when the bladder/bowels filled up. These woudl be stabbing pains. It would totally stop me in my tracks, for a day or two. 4) What have you found can give you relief from an endo attack? Acupuncture was the only thing that helped without giving me side effects like constipation (which can be almost as painful as endo). 5) How has having endo impacted on your career/education? It has made many people doubt my committment, because of sick days. 6) How has having endo affected your emotional health? It made me very sad at times. I wanted a normal life, doing normal things. I also felt like whatever I did to help, my endo was just not getting better. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) My boyfriend and I had just met, and he was concerned that I might not be able to have children, and it made him consider very carefully his committment to me. His mother was also very concerned. I was worried too of course. It did complicate matters in our relationship. When I got pregnant by accident, I was very happy on one level, but also felt I had no choice on another level, as an abortion would most probably have aggravated the endo really badly. And - what if I never got pregnant again. It made me go ahead with a pregnancy I would probably normally not have done (which of course has not been easy). 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Don't give up. You know your body best!! If you have bad reactions from medical people, change them!!! 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? Educate yourself. Find out about all the options available to you, also the less trodden paths. Get advice from other women in similar situations. NEVER do anything you are not sure is right!!!
Elaine, 27, Tamworth: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I have suffered since I started my periods at 13 and was told I had painful periods and IBS on many occassions. I had an ovarian cyst removed in Jan 99 and carried on in pain afterwards and with much persuasion to the original surgeon had a laparoscopy in October 2000. 2) What treatments have you had/been offered and how did you find them? I have Danzol which put on just over a stone, which I was told I would loose (I havent), acne, lose of hair (fortunately I have very thichk hair), Gestrinone gave me severe breast pain so changed back to Danazol which this time made me sick then Bureselin which sent me into Meopause with hot flushes, nausea, acne, hair loss. Some pain relief 3) Describe what it feels like when you are having an endo attack. I have named my pains Mr Knifeman, as it feels like something is stabbing you with one and Twister as it feels like someone has got hold of your insides and twisting them like them are wringing out washing. 4) What have you found can give you relief from an endo attack? I have found no true relief from an endo attack although a hot water bottle and lavender oil does tend to help but you cant do that when you are sat at work can you. 5) How has having endo impacted on your career/education? I find it difficult to work on bad days. This can cause resentment from work colleagues, especially when you dont want them to know what is wrong. 6) How has having endo affected your emotional health? My emotions are a rollercoaster from laughing to verging on suicidal with anger and tears in the middle. My emotions can change with the click of my fingers not just daily. You feel so alone and like this is a huge cloud hanging over you. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) I have not tried for children yet so I cannot comment. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Just push and push your gp for an appointment with a gnae. Dont get fobbed of with excuses. It is your health and life, not theirs 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? Find out as much information as you can and use the NES website. You are not alone, there are more of us suffering than what many realise. 10) Do you have anything else to say that you feel might be relevant? Endo can be a very crippling illness both physically and emotionally, you need as much support as you can get. Talk to other sufferes who truly understand how you feel.
Lucy, 28, Reading: 1) I first started having symptoms at 18 and was diagnosed via laparoscopy at 26. I went to about 5 different doctors including 1 in New Zealand when I was travelling. Each suspected either grumbling appendix or IBS. Nobody suggested Endo until I went to see a new doctor that was an ex-gyne and told him about the pain during sex. 2) I was put on 6 months worth of Zoladex and HRT which was great, no symptoms for 6 months. I am now on pain killers and an anti-inflamatory which are useless unless I have an attack. They just suggested that I stay on the pill for 6 months at a time without a break, which I was doing until I was diagnosed anyway so I know that doesn't work. I have never been offered surgery. 3) Well, as the first few doctors suspected appendix that kinda explains how painful it is. Most people get rushed to hospital when they have an appendicitus because of the intensity of the pain. I also heard a great quote from someone once - a girl that suffered from endo was pregnant and when she went into labour she didn't even realise she was having contractions, she thought that it was an endo attack and nearly had the baby at home. So in that respect it's quite good that we're so prepared for the pain of childbirth. The best way I can think of to explain it is - somebody grabbing all of the skin on your belly and twisting it round and round so your insides get tighter and tighter and then they stab it with a red hot poker until you feel like your going to be sick or faint. 4) A sledgehammer on the back of the head! no, seriously, the feotal position and 800mg of nurofen. There's nothing much you can do once it starts apart from ride it out. 5) I'm tired all the time so I don't think I can give 100% at my job. It's hard sometimes to explain why you're off sick, I've only ever had 3 days off due to endo because I've had an attack in the middle of the night and I'm wiped out. I've explained it as tummy upsets but we all know that, that's a common excuse and never normally taken seriously. 6) Since being diagnosed I've been very down. I thought that they could cure it and after 14 motnhs of treatment I'm fed-up. I don't enjoy sex anymore so my partner suffers too. I find that I'm constantly pushing people away so I can wallow in my own world of self-pity. 7) I've been told that I might have fertility problems and I should start trying at 30 for kids as it could take up to 5 years to get pregnant (if I ever do). I am 28 now so there's not much time left. 8) Keep persisting with the doctors. Because I wasn't aware of the condition I accepted the IBS and appendix business. But if you have an idea about endo, suggest it to your doctor. My gyne wasn't really sure until I had the lap. I was on a years waiting list and every couple of months they'd send me a letter asking me if I thought the lap was still neccessary. You also need to give the docotor all of your symptoms, don't just say 'I've got tummy ache' list everything that you feel. 9) Don't expect a cure, this is only the first step. Now you know what you've got you have to change your life to learn to live with it. 10) I think that people should be more educated about the condition. I don't think I've found anybody that takes it seriously, they almost catagorise it like PMT. One last comment I have to make - I recently bought a house and when applying for life insurance, as a condition of my mortgage offer, I was turned down. The reason they gave was " we cannot accept your policy application until your current medical treatment finishes", as we all know endo can never be cured and I will probably be having treatment forever! The ignorance of that comment made me very very angry. Needless to say my mortgage provider gave me permission to change the insurance company.
Frances, 29, West Sussex: 1. I had always suffered with bad periods from as early as I can remember and from the age of about 16 kept going to GPs telling them my symptoms but told it was normal and to put up with it. I suppose as well I was guilty of putting up with a lot of the symptoms thinking it was "just the way I was". It wasn't until my partner and I had been trying for a baby for a year that we sort help from my GP who sent me for the usual tests. The gynae then found what they thought was a large cyst on my right ovary and wanted to remove it, but when they came to take it out, couldn't find it (!) and a laparoscopy was performed and they found the endo. So I suppose really from going to my GP to having the laparoscopy was only 7 months but I think this was very lucky as the lap wouldn't have been carried out routinely until about 2 years after. Because I initially went with fertility problems, once endo was diagnosed I was told that IVF was my only option and as I never knew I had endo, don't worry about it!! 2. I wasn't initially offered any treatment - I was prescribed some sort of painkiller to take before my period which was also supposed to reduce the bleeding but that made me sick, I tried going on the pill constantly but I kept bleeding throughout so I stopped that, I then tried herbal remedies which seemed to work for a while but then I stopped those too as they then seemed to make the symptoms worse. The last time I saw a gynae she wanted me to take Danazol or Zoladex but I refused and because of this she basically "washed her hands of me"! I have now changed my diet and don't take any medication and I seem to be able to cope much easier this way. 3. It felt like something was twisting my tubes inside and the pain was almost unbearable, I never knew what to do with myself, sometimes rolling around the bed in pain. I often used to be sick. 4. When I got them really bad, almost nothing helped but I used to take painkillers and having a hot bath and laying down with a hot water bottle tended to help. I still use these methods now but thankfully the pain is not as excruciating as it used to be. 5. When it was really bad I used to have to take at least 2 days off sick a month during my period. Luckily this hasn't really impacted on my career. 6. As my endo is the cause of me not falling pregnant it has caused all sorts of emotions over the years. Generally I seem to cope with it but we all have bad days, seeing pregnant women (especially at the wrong time of the month) can be very emotional. I have tried not to let it get to me as it can take over your life and 99% of the time I seem to be able to do that. It also affect my partner, obviously he would like a baby too but tries not to put too much added pressure on me. 7. My partner and I have been trying for a baby now for 4 years with no success because of the endo. I am currently waiting for laser treatment which may give me a "window of opportunity" to fall pregnant. 8. Get to see a gynae as soon as possible as most GPs are very unfamiliar with endo. 9. There are some really good websites - the NES, SHE Trust and some really good books, these will all help to find out as much as you can about endo. Specialists, unless you go private, have very little time to spend with you and explain everything you want to know so reading books and looking up the websites really helps. Also talking to other women with the disease helps enormously. There is nothing like talking to someone who actually knows what you are experiencing. 10. Although about 1 in 10 women have endo, you often feel very alone and "different", even sometimes a bit of a "freak". Try to get as much help and support to keep you going through the bad times.
Judy, 45, Dorset: 1. I had very painful,long and irregular periods since they first started. I always had brown blood at the beginning and end of the period for a few days and the pain increased at the end of the period. I thought it was normal, so I never discussed it with anyone. In my early teens I had a constant pain low down on my left side through to my back. It felt like a swelling. I went to my GP a few times. He said it was nothing. On the final visit in this country he did an internal examination and still said there was nothing wrong. (I now have my medical notes, where he has written that there was a mass on the left side which was noted on internal exam.) I went to live in the USA with my husband just after this. I went to a GP there twice. On the second visit he used a rectal probe and located a large mass, said he was referring me to a gynaecologist immediately, saying if I wanted any children I would have to think about it soon! The gynaecologist did an ultrasound, saw the large mass, asked a colleague for a second opinion. They told me they would have to operate, they had an idea what it was but could not be sure. At operation they found a 12cm chocolate cyst, full of old blood, which had destroyed the left ovary and tube. They removed all of this, told me it was endometriosis, that there was no cure for it, that it could recur, that there were some hormone treatments for it, but that he did not know what the treatment was like in the UK. 2. When I first went to a gyne. again back in England, he told me to go on the pill, which I was not keen on having taken it for several years already. The second time I went a few years later, he said I would be begging him to do a hysterectomy within 2 years and suggested Danazol, a hormone which I took. I was not given any information about the side effects. I changed gyne. He said I could continue wth Danazol, told me some of the side effects . This put me off but I had to get some relief from the pain. When I stopped taking the hormone, the pain quickly returned. I asked about an alternative treatment because of the side effects of Danazol and was given Dimetriose which was new. I was tiold it had fewer side effects. This eased the pain but when I stopped taking it the pain soon returned. It then gave me dizzy spells, so I had to stop taking it. I asked about alternatives and was told there were none. I kept going back to my gyne and he repeatedly told me he was certain I had very little endo. I also had a sharp nerve pain low down on the left side next to the uterus which was excrutiating when I was driving . I coudn't put my foot on the clutch. This was after a laparoscopy when I was told there was no visible, active endo. The right ovary had been stuck but was released and the uterus was stuck to the bowel low down. He said it was better to leave this than to do anything which could damage it. He said no more hormones. When I asked my gyne what I could be done about the pain, his response was "pain is not my problem" I was not given anything by my male GP. Eventually a lady GP gave me Ponstan. Later, I was given Clomid, the fertility drug because I had been trying to get pregnant. Not long after I went to a female GP. saying I felt infected. It felt like worms crawling around and irritating my inside. I felt there was a swelling on the right side. She felt a mass on the right. The next period I was screaming with pain,called the emergency doctor who gave me Tramadol. I went to see the gyne the next day. I had to beg him to let me go back on medication. He said there was nothing other than Danazol which I took for a few months, then stopped because I had been trying to conceive. It felt like an explosion inside me, as though something was penetrating deep into the tissue all over my abdomen. There was talk of a hysterectomy. I had always felt that this was not a solution and I had always wanted to avoid this. I read a little in an old book about endo. where it mentioned laser surgery. I asked if there was anyone doing this. I was told there was a bit of an endo freak in Guildford and I could be referred there. At laparoscopy he said my pelvis looked like a battlefield, it was in a terrible mess. There was a severe infection that looked like appendicitus, an abscess, cysts all in a mass on the right side. The infection was released. I was discharged. The pain did not improve, it had become constant, all the time, every day, torture. I had to go back a few weeks later to have the appendix removed as it had stuck back again. The torture continued. He suggested a hysterectomy if it did not improve. After a real battle with my GP surgery and local consultant I got a referral to Harley Street. He suggested a hysterectomy. I then went to Oxford, described all my symptoms, I could not sit down because of the pain from a lump between my legs. I was taking Synarel, a hormone spray and was told to continue with this. In Oxford I was examined by a visiting Belgian Professor who felt a deep nodule. I went to Belgium for surgery because there was such a long wait in Oxford. He removed the nodule and endo from the left ureter which was starting to block.(These nodules/growths were felt many years before by my loacal gyne, who never told me about them. I now have my medical records noting these on a few occasions) The pain in the same places did not improve. He operated again a few months later in Oxford to remove a nodule from the vaginal wall which he had missed. I also had two more cysts on the right which had developed. There were massive adhesions I was told. When the pain didn't imprive I did a lot of research on the web. and went to see all the main endo specialists in Europe.(Paris, Brussels, Middlesbrough,Clermont-Ferrand), had a very good MRI scan in Paris which showed a nodule on the right which was entering the bowel. All the top specialists gave me a different opinion. I decided to go to France, to Clermont-Ferrand for surgery to investigate this. It turned out to be scar tissue and there was no endo on the right side. However the same pain in the same places returned immediately after the surgery. I tried everything in France including a nerve block and Morphine, and many alterative therapies but nothing gave me any relief. The surgeon in Clermont and the Prof. in Oxford are not sure that a hysterectomy will solve my pain which is due to scar tissue from the endo and my body trying to heal itself. I get no relief and often feel suicidal with the pain. 5. I have had to give up my teaching job which I love. The pain is so severe I can't stand up or sit down, the only way to get any relief is to lie down. I cannot work at all now which is devastating. 6. My husband never took my pain seriously, nor did he encourage me to get the best treatment from the top specialists when they could have helped and done more,.all my treatment has been private but I was not referred to a specialist when I needed it. It is essential to see an endo specialist of which there are so few ion this country. This lack of support by my husband wrecked our relationship. We have been trying to rebuild it and have been to Relate for counselling. I have told the counsellor and my husband that I feel as though the medical profession have destroyed me physically and that I have been psychologically destroyed at home. I am a confident person but now feel a shadow of what I was. 7. I have mentioned a bit about fertility above. I am currently trying to conceive by egg donation as I have been advised against using my own eggs because of my age. After my first surgery in the USA I conceived straight away but miscarried at about 10 weeks. After waiting a couple of months I conceived immediately again and this time I had a daughter who is now studying at Cambridge Uni.I didn't try to conceive again untill afew years ago when I should have been referred to a tertiary fertility clinic because of my history of severe endo. 8. Go abroad. The specialists there will investigate it immediately. France is the best place. 9. Make sure you find out exactly what can be done. Ask endless questions. If you are not happy with the knowledge of the consultant, tell your GP you want to be referred to an endometriosis specialist, not just a gynaecologist. You will probably have to find out who you want to go and see and give the name and address to your GP. If they refuse, go and see another GP. Tell them what your NHS rights are. Info on the internet or from Healthpoints in some libraries. Take the info to your GP. You can also get all the latest research on endo from the Medline website. Take some of the relevant pieces of info. to your GP/consultant. I'm always sending stuff to mine. If they don't like it, go and see someone who is prepared to listen to you!. The best person I have found at this is French.! 10 There's loads of info. about endo. Go into it in depth, show that you know what you're talking about and you'll get the most appropraite treatment fro you. Start or go to a good support group, preferably an independent one, not linked to any particular,national charity. I run one in Poole, Dorset.
Anon: I am 46 years old and had a hysterectomy and ovaries removed just after my 41st birthday. I had suffered endometriosis for many years and it had gone undiagnosed. My story is a warning to all those people who do not know what is wrong with them and to find a GP who is willing to listen and find out. I had suffered very heavy periods from the age of 12. After the birth of my only daughter at the age of 29 I suffered severe haemorrhaging. I moved from Scotland to South of England when my daughter was two months and when consulted with local GP,on several occasions, was told that heavy bleeding and cramps were result of birth. I moved from one part of the South to another and found another GP who repeatedly told me that my symptoms were a result of stress (I was a teacher). He examined me on several occasions and told me that since he could not find any fibroids I would just have to put up with it. I asked to be referred to specialist whereupon I was prescribed Norethisterone. When I questioned the consultant about the pills he told me to take them or leave them (basically he knew best and I was not in a position to question him). I was never told at any time that I had endometriosis. Anyway from bad to worse, I returned to the hospital and said that the Norethisterone had worked for a few months but things were as bad as ever. I got no further treatment or information. So I continued to suffer for years. Whilst teaching, I collapsed with severe pain and my colleague took me to my GP who diagnosed stomach upset. Fortunately I had just moved house and my husband came with me to register with a new GP who told me that what I had experienced was a burst ovarian cyst. This was when I was 39. In the meantime, I fought to keep going at work and tried to deal with the many changes and stress of teaching. I eventually had two breakdowns, the first was not as severe as the second and I returned to teaching after the first breakdown. I thought that I was just not coping with the stress of the job. Everyone else I knew suffered from cramps and some from heavy periods. (In hindsight, I now realise that I had played my symptoms down, not wishing to seem wimpish). My then GP was magnificent in his support although neither of us was aware that I had endometriosis. Only when I had retired early from teaching due to stress, aged 40, and with the very small amount of lump sum given to me on retiral did I take myself privately to see a specialist. This consultant diagnosed severe endometriosis (abdominal organs all glued together) and polycystic ovaries (size of a tennis ball was the phrase he used). The only course of action was a hysterectomy. I was treated with Danazol for five months prior to my op (this period was very difficult indeed) then underwent the operation and made a very speedy recovery. However, although the quality of my life had improved beyond expectation, I have reason to believe that the endometriosis has returned. I have been taking Oestrogen HRT since the op. Intuitively, I felt that I would have benefited from a combined HRT (ie oestrogen and progestogen) since the progestogen would help keep the endometrial cells (ie those that had been left behind after the op) from multiplying. I have recently been prescribed such a preparation and am awaiting an appointment to see my Gynaecologist to confirm whether or not the endometriosis has returned. The effect on my life so far: My career was cut short and because of the debilitating nature of the disease I was unable to go for promotion (Interestingly I held two head of department positions before I was thirty). I was academically capable of achieving much more. I have had two jobs since operation, first was an 'easy' office job which eventually I left because it was not challenging. The second job was with a prestigious blue chip firm where I had a managerial role. I have had to leave this as I felt I was not able to cope rationally - could not think straight, easily tired, abdomen swelling and pain around the surgical scar tissue. I believe (and this is just a gut feeling) that all these symptoms were due to return of endometriosis resulting from oestrogen overdose. My relationship with my husband has been very stressful, since sex life is, and has been, almost non-existent for more years than I can remember. My husband is very supportive. I get very bitter and angry sometimes but usually can look on the bright side. Main concerns: Has my 17 year old daughter got endometriosis? I find it difficult to talk to her about it since she witnessed my pain, heavy bleeding, embarrassing flooding, etc . She knows what endometriosis can do and so I must find a way of helping prevent her from going the same way as me. Incidentally my mother suffered exactly the same symptoms but she got no treatment whatsoever. It is only on discussion now that she realises she too suffered the same fate. Also, I would have felt much more comfortable about taking HRT had I had regular hormone level tests. I believe that the oestrogen was overdosed and that I was suffering from an inability to think straight and excessive mood swings due to this overdose.
Theresa, 31, Aberdeen: 1. I HAD ENDO SYMPTONS FROM ABOUT THE AGE OF 20. OVER 10 YEARS I SAW SEVERAL DIFFERENT GP'S AND THEIR DIAGNOSIS WERE EITHER JUST ONE OF THOSE THINGS, STRESS, DEPRESSION, TOO FAT OR DURING THE FINAL YEAR A KIDNEY INFECTION. 2. I HAD 2 LAPAROTOMYS (DEC 99 & AUG 00) & I AM CURRENTLY ON ZOLADEX TO PREVENT ME HAVING PERIODS. 3. MY ENDO ATTACKS ARE WHAT I THINKL BEING IN LABOUR & HAVING CONTRACTIONS IS LIKE. PAIN ALL THE TIME BUT SEVERE CRAMPS EVERY FEW MINUTES. YOU CAN'T BEND OR WALK - IT HURTS TO GO TO THE TOILET - YOUR THIGHS & BACKACHE AND SOMETIMES YOU FEEL REALLY SICK & DIZZY. 4. VERY STRONG PAINKILLERS / INJECTIONS FROM A DOCTOR. USE OF A HOT WATER BOTTLE ON TUMMY OR BACK. HOT DRINKS BUT WITHOUT CAFFEINE 5. LAST YEAR I HAD APPROX 23 WEEKS OFF DUE TO HOSPITAL STAYS & VERY BAD DAYS. LUCKILY MY WORK ACKNOWLEDGED THAT I HAD A SEVERE PROBLEM AND THEY WERE / HAVE BEEN VERY SUPPORTIVE. TO THE EXTENT THAT THEY CREATED A WHOLE NEW ROLE FOR ME & THEY PAID ME IN FULL FOR ALL THE TIME I WAS OFF. THEY UNDERSTAND THAT I NEED TIME OFF FOR HOSPITAL / NURSE / GP VISITS AND ARE VERY VERY ACCOMODATING. 6. I HAVE BEEN VERY WEEPY AS I AM UNABLE TO CONCIEVE - I AM GOING TO HAVE IVF - WHEN I HAD MY OPS WITHIN MONTHS OF EACH OTHER FOR SHORT TIME I HAD A SEVERE CASE OF THE WHY ME'S AND FEELING VERY SORRY FOR MYSELF BUT THEN I REALISED THERE WERE ALOT OF OTHER SUFFERERS WORSE THAN ME. 7. AS ABOVE - I START IVF IN MAY 2001 - I CANNOT HAVE CHILDREN - MY TUBES ARE BLOCKED AND MY ENDO IS VERY SEVERE. 8 & 9 PERSEVERE - GET A SECOND OPINION. I FOUND OUT THAT EACH INDIVIDUAL DR HAS THEIR OWN OPPINION & METHODS. ABOVE ALL DO NOT BE AFRAID TO ASK SILLY QUESTIONS. MAKE SURE YOU HAVE A SUPPORTIVE & SWITCHED ON GP. MAKE CONTACT WITH FELLOW SUFFERS ON THE ENDO WEB SITE - ITS GREAT YOU DON'T FEEL SO ALONE. 10 I COULDN'T HAVE GOT THROUGH EVERYTHING WITHOUT THE 100% SUPPORT OF MY HUSBAND - MAKE FAMILY AWARE OF WHAT ENDO IS - OTHER THAN MY HUSBAND MY FAMILY THINK IT IS JUST BAD PERIOD PAIN !!
Paula, 33, Midlands: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? My first problems were in started in 1986 and I was finally diagnosed in November of 1999. I had 3 periods of real problems. The first when I was a student ultimately resulted in my being sent to a psychiatrist before I finally collapsed with a large ruptured cyst. The second was in 1992/93 when I had a lap and was told there was nothing wrong with me. When I had problems in 1999 I had private medical insurance which allowed me to see the gynae that diagnosed me. But I was still given no information at all and offered an inadequate treatement and had to find my own surgeon and pay privately for the treatment. 2) What treatments have you had/been offered and how did you find them? I had a laparotomy for a ruptured ovarian cyst (they thought it was appendicitis) in 1987 when I was 19 - it was so painful I though I was going to die before the operation but that was nothing compared to the pain afterwards. I can only assume with hindsight that they did not give me any pain relief. In 1988 I was diagnosed with PID and put on bed rest in hospital for a week after being rushed into A&E with similar symptoms to the ruptured cyst. This was pointless and distressing as they put me in with the women having miscarriages. I had some problems in 1992 - mainly 10 day periods every 3 weeks and bleeding between. I was given a lap which apparently showed nothing - considering how severe my endo was a few years later they must have missed it. I was then put on a hormone drug of some kind which made me feel like sh*t although did regulate my periods. In 1999 I collapsed in a lot of pain again and had the diagnostic lap which diagnosed the problem privately. Oh the joy of a private hospital. Privacy and Respect. However this gynae wanted to give me six months on Zoladex with HRT addback followed by lasering off the 'worst' of the disease because it is 'too dangerous' to remove it from the bowel. I was only just holding down my job as it was and I wasn't about to go through the joys of menopause just for a temporary reduction in the size of the implants which would make a surgeon who didn't feel able to do the full job less able to see them. He had given me no information about endo but I had spent the two weeks between the op and the consultation reading everything I could lay my hands on and I was horrified at his attitude. I more or less got thrown out of the consulting rooms with nothing (AND I was paying). I phoned Professor Garry at the WEL's secretary and arranged a private appointment and told my previous gynae to send up my notes. In March of 2000 I had radical laprascopic excision done and Prof Garry managed to remove all of the implants that he could find. I have had mostly pain free periods for about a year but I still get very tired. I also have used the Dian Mills (author of Endometrioisis the Key to healing through nutrition) diet which has been very helpful with the tiredness. I payed for a consulatation with her which was a bit expensive for the additional benefits over just reading the book. I find exercise very beneficial. 3) Describe what it feels like when you are having an endo attack. Mostly I am just tired for much of the time. The bad attacks that I have only had 3 times feel like someone has a red hot poker and is twisting my right ovary around it. I also experienced pain during sex which was like having a very sore spot inside my pelvis. 4) What have you found can give you relief from an endo attack? None from the bad ones. The tiredness can be helped by making sure that I get enough sleep, eat as well as I can and most importantly get regular exercise. 5) How has having endo impacted on your career/education? It totally trashed my second year at university but I managed to take my exams in the autumn and finally got a 2.2. It is very difficult to tell whether I would have done a lot better without it as I spent a lot of time socialising and having fun as well!! I struggled on for 11 years at work despite all of the problems. Being diagnosed and treated meant that I could finally admit I wasn't managing and I have gone onto a 3 day week (although I've taken up a masters degree one day a week to try and acheive what I might have originally achieved academically without endo). My employer has been absolutely brilliant throughout the whole thing. I lost the opportunity to do VSO (Voluntary Services Overseas) in 1995 because of my medical record. I am always worried about applying for jobs and finding out that they want to look at my medical history. Particularly the fact that I saw a psycologist back in the eighties. I wasn't mentally ill I was so tired I couldn't see because I was bleeding internally. 6) How has having endo affected your emotional health? Being tired my whole adult life was not good but I managed fairly well. I had worked very hard to get myself fairly fit and when I became ill last time and was diagnosed it was a great blow. I had lots of things that I wanted to do - I always believed that if I kept my medical record clear for 5 years or so I would be able to do VSO. Now I can't realistically even travel too far from a western hospital in case I get bad again. I'm totally fed up with having to watch my husband dig my pond when a few years ago I would have got a spade and joined in. I hate getting the guys at work to move my computer equipment - I want to just do it myself. It changes the whole way you look at yourself - you start to think "can I really manage that?" instead of just doing it and seeing. Painful sex can be a real problem within a realtionship but this has thankfully now got better since the surgery. I resent the fact that I have had to think about having a baby at an age when I wasn't ready to consider it yet. Especially when the chances are I wouldn't be able to anyway. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) My tubes are blocked and I have been told I will not conceive without IVF which I do not want because it can accelerate endo. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Find out as much as you can about the diseases and the treatments - you will need to decide for yourself what treatments you want or otherwise you will simply get what the gynae you see has been using for years or feels confident to do. If you can afford it find the best endo specialist you can and pay for a private consultation or even lap. If you haven't been to your doctor yet then get private medical insurance first wait a couple of months if you can and then go. If your gp doesn't take you seriously then change GPs - you are allowed to. 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? See above. Don't just accept what you are offered, fight for the treatment you want and don't give up just because you get a bad reaction. Be prepared to pay for a private consultation with the consultant of your choice. Never have a hysterectomy until you have tried laparoscopic removal of all of the disease by an experienced endo specialist. Try to get hold of a copy of Dian Mills book (see above) and get as much exercise as you can manage.
Caroline, 35, Bolton: 1) I was diagnosed with endo in December 1993 but I had suffered painful periods for many years prior to this. When I think back, I would say that the symptoms started when I was 15, about a year after my periods started. I became very anaemic and took iron medicine for about 9 months. I remember going to the doctors with my mum quite often because of the pain I suffered every month but I was given so many reasons for this, I couldn't begin to tell you what they all were. I was repeatedly given Ponstan (Mefanemic Acid) on prescription but they didn't help much. The doctors were always men and made me feel like I was a wimp. They obviously didn't think to investigate further and I only managed to break the 'professional wall' down after seeing a woman doctor in Lancaster in approx 1990 (where I lived at the time). She said she would refer me to a specialist. I was about 24 by then. I didn't get referred until 1993 though because I moved back home after divorcing my husband. I had to sign on with new doctors etc and go through the whole process again. 2) During my first laparoscopy in 1993 when I was diagnosed, they found severe widespread endo and performed some laser surgery to remove some of it. I was then given a six month course of Danazol along with iron tablets for anaemia again. In 1997 I took another course of Danazol for six months (which gave me daily nose bleeds!) but the symptoms returned with a vengeance when I stopped taking them. The side effects were horrible: hot flushes, greasy skin, weight gain etc. In 1998 I had my second laparoscopy at a different hospital to the first. My records were obviously not compared as they did not do anything during the op - they merely confirmed what I already knew - severe endo. A pointless operation. I was given a six month course of Prostap injections into the stomach, which also had bad side effects and as soon as my periods returned, the pain got worse. In January 2000 my boyfriend and I went back to the doctor to request funding to see a specialist in Middlesbrough. I had heard about him through The Endometriosis Society which I had joined in 1999. After much to-ing and fro-ing from doctor to consultant in Bolton I was given a course of Dimetriose tablets, which for me was the worst treatment I have had. I began to lose weight quickly from March 2000 onwards (I stopped them in July 2000) and my weight is now 8 stone 2. I was 10 and a half stone. I haven't been able to put it back on but I think it is because of the amount of painkillers I have been taking over the last two years, when the doctor simply wrote one prescription after another and hoped I would go away. I finally received an appointment to see Professor Garry's team in July 2000 and was offered surgical removal of endo by laparoscopy. Because of the severity of my endo, this was a lifeline for me at last. The waiting list was 14 months so I signed up for a clinical double blind trial which meant that I would have to have two more operations, six months apart. I wouldn't be given any info for twelve months and I wouldn't be told which op was the placebo and which was the excision surgery. I was desperate for help - so I agreed. I had stage 4 endo which has now been removed and I am recovering at the moment. I am so looking forward to getting my life back and I have so much praise for the team which helped me. 3) Endo attacks - these are very scary! Especially when you end up in the A&E Dept and the staff look at you as if you have the lurgy or something. During an attack I would be on my knees, desperately trying to stay with it, feeling like a drill was boring into my back and rectum. When this happens, no painkiller will help and you honestly feel like you are going to die. The whole of my pelvic area would be 'on fire' and it felt like something inside was about to explode. I had to try to breathe with the pain or I would almost pass out. I have listed some words which help to describe endo pain for me:- Pulsing, shooting, boring, sharp, gnawing, wrenching, searing, exhausting, sickening, terrifying, vicious, penetrating, torturing. 4) I have a ritual which consists of hot water bottles, an understanding boyfriend, a cocktail of pills!!! I put one bottle against my lower back (on the right hand side) and one underneath my bottom. My boyfriend lies beside me and holds my hand ( he has the nail marks to suffer!) and tries to help me focus on something other than the pain. In the last twelve months I have been taking 3 types of painkiller per day (during a period and for about a week after). I then reduce the painkillers if I can but I didn't have a break from pain between periods really. I took Tylex (codeine), Ponstan or Voltarol (anti- inflammatory) and Buscopan (to relax the bowel). 5) Although I have been in severe pain for about two years now, I have managed to go into work by taking my leave at specific times, using flexitime and generally gritting my teeth!! This last year I have completed my professional qualification to be an Accounting Technician (AAT) - how I don't know! - determination I suppose. Maybe this gave me a focus but I would have liked to have taken on a promotion at work. Endo stopped me from doing this as I didn't have the energy to take on a new position. 6) Emotionally I have coped very well I think, but that is due to my boyfriend being here for me. I do get down at times and feel like giving up but at the same time I will not let this thing beat me! It is very draining though when you have no hope of relief from it. Hopefully Prof Garry's team have changed all that for me! 7) I haven't really tried for any length of time to get pregnant due to the treatments I have had. However during the times when no precautions were taken I didn't get pregnant. I was told by my local hospital that I would not concieve naturally and I would need IVF. I have since learned that this was bad advice because IVF is not suitable for me due to the severe endo. We are hoping to try soon, now that I am free from the disease. I have been told that this is the best time to try. 8) I would advise any woman to stand her ground and go to the doctors armed with articles about the disease and do not delay!!! My own ignorance and primarily the medical professionals left me with severe pain and loss of quality of life for many years. 9) Once a woman has been diagnosed she should read up on the disease and join the NES. Be aware of it and learn how to help yourself to cope and do not suffer in silence.
Julia, 27, County Durham: 1) Diagnosis. How long did you have endo symptoms before you were diagnosed and did you have any negative responses from medical professionals? I was diagnosed in March 2000, but after my first op was told that the endo had been there for years and years. I did go to the Docs constantly when I was 14 - 17 with extremely bad period pain. I was told it was only period pain and eventually put on the pill which masked the disease for years. Even when I went back aged 26 they tried to tell me it was 'just period pain'. If I had not been insistent, God knows what I would of been like now. 2) What treatments have you had/been offered and how did you find them? Offered the pill again - decided against it as it had covered my problems for too long. Zolodex - No help really, except for gaining 2 stone, moody, dizziness, sickness, hot flushes Conservative Surgery - Endo has returned (felt better after surgery for about 2 weeks). Danozol - Not sure only been on it a few weeks but it is doing damn all for the pain. 3) Describe what it feels like when you are having an endo attack. Endo is more something that I live with daily. I am in constant pain however this has various degrees to it. Really bad attacks are when the pain is everywhere and you can't sit, stand or lie with out agonising pain, usually in floods of tears and unable to see away out. 4) What have you found can give you relief from an endo attack? Still searching - The annoying thing with Endo is the Doctors don't even know what to do with you. I am now trying alternative treatments such as counselling, nutritionist and reflexology. 5) How has having endo impacted on your career/education? I would like a career change but may have to have a hysto so there is no way I can contemplate changing career. However my current company are brilliant and very supportive, especially my manager (who is infact male!). So I feel 'safe' where I am at the moment. I do however have a bit of a nasty sick record! 6) How has having endo affected your emotional health? If I am honest I am a wreck! I try to think about people worse off etc but it can only go so far, and you end thinking why me? Councilling is cool - apparently I am very angry about what is happening! I am also very moody and do not know how I will be each day. 7) Have you experienced fertility issues as a result of having endometriosis? (Please detail.) Yip as I said early I am waiting see if the next step is a hysterectomy. 8) Have you any comments to offer to a woman who suspects she may have endo and is trying to get a diagnosis? Period pain is normal - Period cramps are not. Be persistent. 9) Have you any comments to offer to a woman who has recently been diagnosed with endometriosis? Be persistent and never give up. Read up on Endo - the Doctors don't tell you much and it will all seem like jargon at first. 10) Do you have anything else to say that you feel might be relevant? If only more people were aware of it.
Caroline, 27, Ripley: 1) It has taken the doctors 3 years for doctors to do a Lapi, before that I have been in and out of hospital always being diagnoised with kidney problems because I was suffering from lower abdimen pain, the only reason I had the lapi back in November because I moved and the new doctor listerned and was concerned he new what it might be. 2) In the las t6 months I have been on 2 different kinds of hormones, but they made me snapping, gave me mood swings, they just made me nasty and I could not control it, but I came out of hospital agin on Tuesday, and they have stoped this treatment and just sent me home with a carrier bag full of different pain killers and told me it would be best if I try to get pregnant. 3) The pain fells like someone is kicking and putting pressure on my abdimen and pelvis, sometimes its fells a bit when I was prgenant at the later stages when the pressure hurt my pelvis. 4) For a short fix on the pain I have hot baths, but nothing long term apart from pain killers but they make me tied. 5) I really stuggle to hold down a full time job and look after my 5 year old, I have already ruined on career and now I am on a 6 month trial with this job and even though my performance has been 101% my attitude when I was on the hormones caused problems ( they said it was like an over night transformation in personality) and being in hospital, I think I will lose this job. Also family life is a strain, I just have no motivation and just sleep a lot. 6) I just fell like I am about to have a nervous breakdown, but I never do. I'm just tierd and depressed because the doctors and those close to me just can not help. 7) Not really, they just said I might not be able to conceive but the sooner I try the better, but I just can not afford a baby. 8) Ask the doctors to do a lap. 9) I found more information over the net than what the doctors will tell you or know.
Lorna, 19, West Midlands: 1) I have had endo for as long as I can remember, probably started when my periods did when I was 9. However was only diagnosed last August. To say that I have had negative experiences is an under statement the first GP that I saw that endo was an impossibility even though my mom had it, she said that it was just painful periods and constipation. Eventually very reluctantly she reffered me to the worst gynaecologist you could imagine, and she was female so I would have thought she would ahve been a little sympathetic! She did investigations on me which were all extremely unpleasant, and then told me I was a "silly little girl" and to stop complaining and that everyone my age had painful sex and painful periods!!! When I went back to my doctors surgery I saw a different GP who I must say is very lovely and rushed me an appointment to see the top consultant. Mistakenly I was took through to see the first gynae that i saw, and she said that she didn't know why I had come back 'cos there was nothing wrong and what did I want her to do about it! Anyway they eventually got me to see the specialist who is finally sorting me out! 2) At the moment I am on Zoladex and it has been brilliant, I get a few side effects like hot flushes, loss of libido, weight loss, but thankfully I have had minimal pain and no periods for 4 months!! 3) When an attack comes I basically don't know what to do with myself it feels like someone is grabbin hold of my insides and twisting them as hard as they can. I can't sit 'cos that hurts, can't sleep, can't stand and am doubled up most of the time. I can't go to the loo 'cos even that hurts, but you have to manage! It also feelslike I am being repeatedly punched and kicked in my abdomen and my kidneys, and a really weird burning feeling all in my stomach area. 4) Nothing really takes the pain away, but the best things I have found are to take some really strong painkillers have a hot bath with lots of candles lit and my favourite music. Also I have a permanent hot water bottle attached to me. 5) Before I went on zoladex I was having about a week of work a month, thenkfully my boss understands as she has had problems too. Also I am at uni and they have been brill too they have given me extensions on work and been supportive so thankfully it hasn't had too drastic an effect 6) I would say that one of the major ways inthat endo has affected me is my emotinal health. One minute I'm happy and hyper the next I'm a blubbering wreck, I'm taking herbal antidepressants to try and level my mood off a bit. 7) Drs aren't really too sure how badly my fertility is affected yet, they're hoping that the zoladex will bide me some time. I have been told the sooner the better though 8) I know quite a few people who suspect that they may have endo. but they are being fobbed off by the Drs just like I was. I tell them to keep trying and not to give up even if you have to be on the phone all day every day and writing letters to anyone you can think that might help. 'Cos thats what I did and now it is being sorted, specialist siad that even it had been left much longer my fertility would definitely have been buggered! I would hate for that to happen for anyone else 9) My comments would be to get a big support network of peole if you can. There are plenty of meetings up and down the country aswell as internet sites, also make sure that your family understand it 'cos it affects them aswell as it affects you 10) Don't give up! |