My story

[Lucebyrne]

Hello everyone. I'm new to this page. Sad to hear so many people suffer from this condition but it helps knowing there are people out there that know what you're going through. I'm a 20 year old girl and this for me is quite scary, so any advice would be much appreciated!

It all started this time last year for me when my appendix burst and I was rushed in to theatre to have them removed. Exactly a month later I was rushed back in to hospital with the same abdominal pain, on Christmas Eve I was diagnosed with a 5cm simple cyst on my right ovary. They allowed me to go home and told me to go back after Christmas however, the hospital forgot to follow this up. After a months wait, I contacted the hospital and they apologised. They told me to go for an ultra sound scan to see if the cyst was still above the guidelines to operate on (5cm). It turned out my cyst had shrunk and they were no longer happy to operate. Months passed and I was in excruciating pain, in and out of A&E on morphine and gas and air every time it was my monthly period. I was put on the levonorgestrel pill and told to take them back to back, not allowing myself to have a period. This helped a lot but the pain of the cyst was still stopping me from doing day to day activities. My GP sympathised with me and sent me for further investigation. I had an internal scan which shown signs of endometriosis, my cyst still 3cm. I was given a date for surgery on 28th August 2014 where they would remove my endometriosis and whilst I was in theatre, they would remove my cyst because it was causing me a significant amount of pain still. I awoke from surgery for my surgeon to inform me my cyst was in fact a 7cm dermoid cyst that had started to grow teeth and hair. They found I had stage 4 endometriosis and because of this, my womb had stuck to my bowels causing my left ovary to be trapped in between. They didn't sort this problem as they'd need different surgeons, so during this laparoscopy they only removed my cyst and a little bit of endometriosis. They put some liquid in my stomach to separate my bowels from my womb but unfortunately, when I stood up after surgery, my stitches split and the liquid fell out on to the floor (gross!!!). With it being day surgery, I was told to go home. After a few days, the pain got better until one day I woke up with a horrible pain in my pelvic area. I went to hospital and they gave me an internal scan which shown I had a build up of fluid and internal bleeding just above the ovary that had been operated on, again I was sent home with antibiotics. I had an MRI scan a couple of weeks later to see what was then going on in my messed up body. At my follow up meeting last month my surgeon informed me what went on during my op, what stage my endometriosis is, what still needs to be done and what treatment I can take in the meantime. I have opted for monthly stomach injections which will thinner the lining of my womb causing the bleeding to stop that has been happening since my operation. They advised me to stop taking my levonorgestrel pill unless I needed it for contraceptive reasons. I stopped taking them and I noticed the bleeding becoming a lot worse, losing clots and the pain came back. I rang the NHS helpline last week desperate for help, they told me to go to A&E as I was losing too much blood. Instead I went to the doctors the next day and they took my blood and also advised me to start the levonorgestrel pill again. Since taking it again, my bleeding has stopped completely for the first time since August and I am now just waiting for my blood results back. I have another stomach injection at the hospital tomorrow where I will discuss further with my surgeon about further surgery. I will be happy to answer any questions anyone might have as before this I knew nothing about endo!

[Hriverson]

I have had such a similar experience to you and were the same age! Its so frustrating because at 20 i never thought id have to spend weeks in bed not being able to go out with my friends because of pain!

I was diagnosed with polycystic ovaries and suspected endo at 13 they put me on noramin continuously so i didnt have a period for 7 years. I was rushed to hospital one night where i was in excruciating pain and the doctors were horrified that i ever was told to take the pill like that and it could have harmed me a lot more. I think the main issue is that the doctors all seemed to have had completely different training and no 2 say the same thing!

When i was 15 i had a large cyst that had popped but was causing pain, they found a large amount of fluid but said it would drain itself... Unfortunately it never did and up untill 2 weeks ago that fluid was sat in my pelvis and had caused a serious infection, and possible infertility that had spread to various places inside me... Because of this they didnt get to do a lot in my lap due to the infection being so bad it could cause it to spread further so ive been given antibiotics and thats it... No talk of whats next or anything, i cant really believe that ive been in pain since i was 13 down to an infection, im pretty sure id be dead, so next week im going to go back to my GP and press for them to look again. Its so unfair!! How do your friends find your condition? I find mine dont really get it and dont understand when i dont want to go out, i think they think its just stomach cramps

[Lucebyrne in reply to Hriverson]

Jheez! That's such a long time to be in the pain, that must be horrible. Was the lap- you had done to clear the infection, or did they find that whilst they was in there? Have they removed your endo? Yeah, just keep pestering your GP until they finally do something about it. It took numerous appointments for them to finally investigate further with me, but it's worth it. It's your body at the end of the day, you deserve to know what's going on in there. I definitely agree with the different training doctors/nurses have been given as they all say different things and it's almost like they work against each other, I never know what to believe. I've been off work for 12 months with it now and I find it so frustrating that I'm still at home in pain most days, whilst my friends are all at work getting on with their lives as normal. My friends haven't been very supportive through this unfortunately, I feel as if they're too caught up in their own lives to really care. Non of them understand it though to be fair, I think if they did then they'd be a bit more considerate. They've stopped inviting me places because I'm usually in too much pain to go to nightclubs etc, which is sad because I feel as if my life is at such a standstill and there's no end in sight. I mean, some days are better than others (pain wise). One of endo's symptoms is depression and being couped up in my bedroom 24/7 is starting to take its toll. I've been trying to stay positive and support groups like this are the first step to overcoming the depression as I don't feel as lonely. It's not just us that it upsets, it's our families too! It's all still so new to me, it's literally just been one thing after another and I find it gets quite draining. Have they said to you what the probability of you getting pregnant is, or have you already had children?