Endo nightmare!!!

Well what can I say or should I say where do I start? 2013 I had laproscopy because doctors found a 6cm cyst on right ovary. Went to hospital to see gyno who mentioned I needed a ca125 blood test to see if it was cancer. I was no good. I was 28 years old and scared shitless. I got my op date for 24th of November but then I recieved the dreaded phone call, my cancer text came back higher than what it should have been so then moved the surgery date forward. I was a mess. My mam who had breast cancer was so scared but she was great. After having the op it turned out that it wasn't cancer after all and was a endometrioma. I was so relieved. After surgery I had to go on prostap injections to stop me having periods for 3 months to help me heal. The worst part was getting the drain out of my tummy. Worst bit ever. It took me around 5 months to get back to work. All was well for 2 years after that surgery then I started getting pain again on my right side I was constantly constipated I could go weeks without going and an awful niggly pain in my hip and rib. Last time the pain started in my shoulder. When I lay down it felt like a big lump in my lower back. I had ultrasound which showed a 7cm cyst behind my uterus. Again I needed a ca125 test but this time I also needed hcg,lhd,apf among other tumour markers. Thankfully they came back OK. I had laproscopy done again 14th December 2015 and I had 2 large endometriomas one in either ovary with kissing ovaries and the whole sticky mess was stuck to my bowel. The doctor deroofed one cyst and drained and did a cystetomy on the other he also got rid of adhesions from my pelvic wall and tubes what was ment to be a standard 45 min procedure turned into a 5 hour bloody mess. Which ended up in the surgeon nicking my kidney and me losing 2 pints of blood. :( I had to stay in hospital over night as my blood pressure was dangerously low and I was so anemic I nearly needed a blood transfusion. I was discharged the day after and was mobile but need to take 3 iron tablets every day. The cuts in my tummy are healing nicely and for the first time in years I'm actually having bowel movements every day. :) I had an mri scan on 29th December which I still not sure why but I should get results in 2-3 weeks time. I'm sending an endometriosis specialist in Feb 2016 aswell as the endo I have is servere. I'm worried about getting pregnant now as I have never had children and I would love to. Has anyone who has had servere endo got pregnant naturally? Or is ivf, surrugracy or adoption my only options here?

6 Replies

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  • Hi there - sorry you have had such an awful time - it is possible to get pregnant with severe Endo - it seems to depend on whether you have any problems with your tubes, ovarian function or in your uterus (adenomyosis). I am glad to hear you are seeing an Endo specialist as they will be able to talk you through all this, just be careful what drugs they give you as some can impair ovarian function, but again they will tell you if you ask ! Ask if they checked whether your tubes were clear at the last lap. It seems odd to me to do an MRi after surgery as a specialist should have removed all Endo while doing the surgery - but maybe they don't feel comfortable they have done this hence the MRI and referral? To be honest it sounds to me like they are doing a thorough job now - even if it feels LMT winded hopefully you will get there ! Good luck I am sure you will be much better now and hope the specialist is a good one.

  • Hiiiii thanks for getting in touch sometimes it feels like no one understands. I really have no idea why they did an MRI after like u I would have thought they would have done it before. If there is still endo there on the scan do you think I'll need another lap? I don't think I could go through with it for a third time. :( I've also read that some people with servere endo have less than 2% chance of getting pregnant. If this is the case I'm gonna be heartbroken x

  • Hi there - I think it's probably best to wait and see the specialist before getting too alarmed. I don think that stat sounds right at all - if the Endo is properly excised and you have healed from surgery then there are still good chances. I think the probabilities are lower for women who do not get the right treatment and try for years with the disease still there - then it's bound to be harder? They may want to do another lap if you still have Endo at some point - but trust me they do not rush into operations lightly, it's actually much harder to get one than them actually wanting to do multiple surgeries and if you look OK for now for TTC then they may suggest it is better to wait until after family for further surgery. Probably best to see what they say then ask again if you aren't happy. Try to go armed with as many questions as you can if you are seeing a specialist - it's valuable and rare time you get so be prepared. (The Endo UK website has a list of questions to ask as do some of the other Facebook groups for Endo in their "files". May be worth checking those out.

  • Thank you xx

  • I have seen many women who go to the best endometriosis excision specialists go on to have babies!

    I unfortunately was not one of them because I did not know of endometriosis excision specialists all those years ago so I got a complete hysterectomy/bso and no babies instead...so yes if you still have your organs and go to a true endo excision specialist the chances of having a baby are HIGH...get to specialist and have that baby...healing energy to you!

    This is a great resource of accurate medical research on endometriosis

    endopaedia.info/

  • Thank you so much xx