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Hi, my name is Michelle, I am 27, and this is my story!
I have always suffered from bad periods, I can remember as a child at the age of 11 complaining to my mum about the pain and heavy bleeding and taking days off of school because I was so embarrassed. By the age of 14 I was on the pill (bcp) to try and help with the pain and bleeding, it didn’t really help that much, but it was a bit better so I stayed on it. All I was told as a kid was “You take after your Mother Dear!”, not much comfort. Years went by and my pain got worse, although I tried to learn to cope with it. Then 4 years ago I went to my Doctors and said “Hey, what’s this Endometriosis thing? Do you think I might have it?”, my Doctor thought that it was possible and therefore referred me to a Gyn. At the appointment I found the Gyn very condescending as if he didn’t believe the pain I was in, and I could almost hear him thinking “here’s another one making a fuss!” After an internal examination he said that he could find nothing wrong, apart from a small build up of tissue in my cervix. This was removed by laser and I was told to take a drug called Naprosyn to help with the pain and have a baby!!! Well at that time my husband and I were not ready for a family so life carried on. Two years ago we decided that now it was time to have a baby, so I therefore came off the bcp. Wow, what a big mistake!!! Within 3 months the pain was severely worse and I started suffering from constipation (something I had never suffered from before. Needless to say (to cut a very long story a little bit shorter hehe!) I didn’t fall pregnant, instead the pain and bleeding got steadily worse. I started getting really BAD cramps in my stomach which bent me in double! I was taking Pethidene like Smarties for the pain and then I started having periods from my back passage. It was now that I started to panic. I phoned my doctor on Boxing Day because I started bleeding from the back passage and was really freaking out, and he calmly told me that ‘I must have strained too hard!!!’, or ‘I had piles!!’ As you can understand this didn’t help me at all, apart from upsetting me even more. The next month the bleeding was back, so my husband took me to the doctors because he had had enough of them ‘fobbing me off’. Suddenly everybody seemed to sit up and take notice, I believe it is only because they realised that the bowel bleeding was regular and obviously NOT piles!! I was referred to a gyn who confirmed that I had severe endo and had probably had it for about 10 years!! He even said that if it had been caught sooner it would have been easier to treat!! When I asked if it would have been diagnosable 4 years ago he said “Oh yes!!” As you can imagine this made me really mad!! I had my first laparoscopy in April 97 and post op was told that they could not remove any of the endo because it was too severe and would have caused more problems. I was them put on Danazol for 6 months at 600mg a day to try and put the endo into remission. These 6 months were good. I had a good holiday and the periods and bowel pain stopped. I then had my second laparoscopy in December 97. Again I was told post op that they still couldn’t remove any endo because of the severity, and that it had actually got worse now and had spread to my liver and lungs!! So ontop of everything else, I now get pains in my chest and shoulder and have trouble breathing during a period. He also said that he was now worried about me getting a ‘Frozen Pelvis’ and after he said that ‘So Was I!!!!’ This time the gyn put me on Zoladex implants, fun little injections into your stomach! I have been on these for 2 months, I have already had one period although it does seem to have stopped any more, but I still get very bad bowel pains every morning. On my last visit to my gyn he said that it looked like the Zoladex wasn’t working and he is now stumped as to what to do next. He said in all his years of doctoring he has never seen endo this bad. He feels that ‘damage limitation’ is the only choice now, as it seems that the endo refuses to go into remission. He now wants me to see a specialist in endo (about 3 hours from myself) and get a second opinion. I now have to go on Danazol again, but this time at 800mg a day (the max dose you are allowed to take) and await the appointment with the specialist. My fears of going back on Danazol are the dosage, as it can cause Osteoporosis and has some very nasty side effects. I was also told that now my husband and I should really start thinking about having a hysterectomy, as this may be the only way of controlling the endo! He knows that there is always a chance of it coming back but at least the damage it could cause may be lessened. Of course this means we will have no chance of a family (which we desperately wanted), but as my left ovary is stuck to my bowels and the right ovary is covered in endo, I guess the chances of conceiving were small anyway. My gyn said that even if I could get pregnant, I probably wouldn’t be able to carry a child due to the severity of the endo and the damage in my pelvis and diaphragm area. Well, that’s it for now, I await news from the specialist as to when I can go and see him, and when the next op will be. They need to remove part of the bowel and my left ovary, and it is whether they take out everything else out at the same time or not. I will update you with any news as it happens. Keep well Luv Michelle
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