As I said last night here is what I wrote less than three weeks after my surgery probably while on strong painkillers. I posted this on an endometriosis webpage and it felt better just getting it out at the time. After this post I will start to update on what has happened in the two and half years since I wrote this.
This is a great website and it is really good to know I am not alone. I have read a few of your stories and some of them sound just the same as what I have been through. I have been suffering for the past 5 years if not longer and now it is finally a relief to know what is wrong with me after being made to feel like a fake for years by GP’s and specialists.
My first symptoms where diarrhoea and constant stomach upset I was referred to a gastroenterologist and was told I was suffering with IBS at the time I felt totally fobbed off and that the specialist had not listened to what I was saying.
I was suffering with stomach pain every 3 to 4 months initially that would be so bad I could do nothing I would have to sit completely still and the only time I moved was to go to the toilet. Then the past 12 months went drastically downhill the pain was more frequent and much more intense to the point where I was holding my breath as it hurt to breathe and then gasping air in quickly before holding my breathe again. Over the years I went back and for the doctors surgery every time I was in pain until it got to the point where I felt they just didn’t care until this year where I just couldn’t handle the pain anymore it was that bad.
In March I went back to my GP suffering another severe bout of pain and asked to see a specialist again and so I was referred back for a gastro appointment. Later that same day my sister mentioned endometriosis to me so I googled it online to find out what it was. I had heard the word before and knew it was something us lucky females could get but that was it. After reading all the symptoms and information I started to cry it was all I was going through written in black in white and I could not understand why any of the GP’s had not even thought of it. I made another appointment with my GP and this time I told her about endometriosis and she agreed to send me to see a gynaecologist and for an ultrasound scan. At this time I also had blood tests done to see if there was anything else going on crohns colitis celiac etc but everything came back clear. The only thing picked up on the tests was inflammation markers where sky high normal readings would be between 0-10 my two readings were 68.4 and 100.8!!!
It was recommended I pay privately to see the gastro specialist which I decided to do as the my GP had said it would be best. I got an appointment for two weeks later and I was lucky that my Gynae appointment came through without paying for two weeks after the gastro appointment. The gastro specialist said that I may have slight IBS but he recommended that I see a Gynaecologist as the amount of pain I was describing had to be more than IBS.
Two weeks later I went to my gynae appointment and was told my womb felt enlarged but unfortunately I had not yet had my ultrasound so I then had to wait to have an ultrasound and go back to the gynae. I had my ultrasound and rebooked an appointment with the gynae but before I could get to that appointment I had another bout of pain which was smack bang in between my periods so I thought that was that diagnosis out the window. I had made a deal with my husband that any more pain and he could take me straight to A&E.
In A&E they tried to tell me my pain was muscular at which point my husband went mad and told them to check my record as I was waiting to see gynae and had had an ultrasound done. I was left in a side room for about 30 minutes when the doctor came in to see me and told me I had a large cyst on my ovary and that he was admitting me. I burst into tears out of relief of finally knowing there was something wrong with me and I hadn’t been imagining it all this time.
I was in hospital on strong painkillers for my pain from the Monday to the Friday. I didn’t see a doctor after the Monday until the morning of the Thursday 19th June at 8am. The nurse stayed with me while the doctor spoke to me at which point he explained that my cyst was extremely large and would have to be removed via surgery and I would need to be opened from my belly button right down and hopefully they wouldn’t need to go any higher that that but it was a possibility. As my cyst was so large it was possible that it may have damaged all of my womb and ovaries and that I may need a full hysterectomy. I was devastated as I am 30 yrs old with no children and me and my husband had decided that the time was now right to start our family and that may now be taken away from me. But there was even more bad news part of the cyst was solid and it was possible that it could be ovarian cancer as you can imagine my whole world fell apart at that point.
I had my laparotomy on July 7th and I was so lucky that after all I was told may happen during the surgery most didn’t. They managed to just remove the cyst and leave all my womb and ovaries in tact and my surgeon/oncologist said that he couldn’t see anything that was obviously cancerous but we still had to wait for the test results which would take 2-3 weeks. But he did tell me that I had endometriosis and had removed other smaller chocolate cysts during the operation.
It will be 3 weeks since the operation on Monday 28th just 3 days away and I am yet to hear anything which is really playing on my mind and I wish they would just hurry up and put me out of my misery one way or the other so I can get on with whatever needs to be done next. I am taking each day one by one to recover from the operation which has left me totally exhausted although the pain has eased off quite a lot now except for at night which doesn’t help with the tiredness when your awake half the night.
When I get my results I will update you all with what they decide to do with me next hopefully cancer won’t be an issue and I will just have the endometriosis treatment to deal with. Sorry this is so long but it has really helped getting it all out and written down.