Help ?just found out I have endometriosis

Posted , 4 users are following.

Hi so 2 days ago I went through laparoscopy surgery to remove a cyst on my left ovary. They also mentioned they were going to look for endometriosis. When I woke up and the doctor came round to discuss what they had found they said they did find endometriosis at a bad stage and it was found on my bowel and bladder they successfully removed the cyst which was a chocolate cyst due to the endometriosis but wasn’t able to remove all the endometriosis tissue.

They also told me the removed a uterosacral endometriotic nodule and they have sent it for histology.

They told me it was at a very serve stage and even though I’m 25 they suggested thinking of starting a family sooner rather than later as I will need a full hysterectomy after having children

Has anyone else been told this ?

also i have been having pain when having a wee and there has been blood is this normal ? and any tips in getting rid of the gas from the surgery?

0 likes, 3 replies

3 Replies

  • Posted

    Hi izzy did you get any pain. I am recently diagnosed as well. 8 weeks in. After my lap I stayed in bed for a couple of days and didn't move around too much. Peppermint tea helped with the bloat but the doctor said it will go away slowly which it did. I didn't shower straight away and changed my plaster every two days. The stitches fall out after 5 weeks. After my lap I had blood in stools and urine I think this is normal. The blood in my urine went after 1 week but I still get blood in stools. Have a high fiber diet and don't eat gluten or dairy. This helped me but not everyone.

  • Posted

    Hi izzy16153. I was diagnosed with endo exactly a year ago via a laparoscopic surgery in which they removed a 12 cm chocolate cyst. For me the gas pain was excruciating. I took gas x. You can get it over the counter and it is safe to take whenever. I had blood in my urine as well and just made sure to drink nothing but water for the first few weeks. I also took a stool softener as I had cravings for milkshakes and didnt want to get stopped up(also over the counter) I am a year in and I still have pain in my belly button. Sex is still painful for me. Just a month ago I had a cyst rupture and passed out in the ER because the pain was so bad. I am 23 years old and I was told to start trying for a family as soon as I felt well enough. The dr told me a woman is most fertile after endo removal surgery. I was diagnosed with stage 4 which is the worst stage there is. my dr suggested birth control to slow the growth and development of endo but it will not stop endo it just slows the process. I am in nursing school so a child wasn't my top priority. As it's now been a year after surgery I am scheduled to see an IVF doc as I am struggling to conceive. I suggest not waiting because my doc told me I have one more surgery before they will do a hysterectomy. And it has proven a challenge to get pregnant so waiting wasnt an option for me. I want to be a mom. Talk with your doc about birth control if you aren't ready but I'd be ready in the next few years because endo doenst go away. There is no cure. Birth control can slow the growth but endo will win the battle. Also my doc said to walk. Dont be lazy in bed or on the couch. Simple movement helps the healing process take it slow and dont be afraid to call your doc with any questions. Write out questions or symptoms to discuss with your doc at the next visit. Any little thing is important. Good Luck with everything. I hope this helps!

  • Posted

    I was 27 when i finally got a lap done & diagnosed. I didn't want kids, which was good as i had gone from my teens-25 being uber fertile and by 27 was no longer conceiving, which had happened while on BCP! I instantly began campaigning to get everything removed. Doc wanted to leave one ovary but i'm glad that that didn't work out. I got to go another 27 years before it came back again so badly that they removed a small section of colon.

    Understand that every additional surgery causes more adhesions, so when they say "we're going to leave one ovary in even tho we know we'll have to come back for it later," and they say it so reasonably & soooo casually, there is a cost to having each additional surgery. Also, i am not convinced of the compatibility of the goals of cleaning endo off the "better" ovary and leaving it truly functional. Docs don't talk about that aspect.

    chewing gum helps after all abd surgery, as suggested by my GI doc. Gas X is also good. i can't handle those chewable chalk ones so i get the gel cap kind.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.