My story and advice!

Hi there, I'm new to this site! I have had endo for two years now. It took me a long time to finally get diagnosed but I was suffering terribly from heavy periods and pain and every gynologist was telling me it was a hormonal imbalance and there was nothing wrong with me! Even though I hemoiraged twice and ended up in hospital! Finally, I was recommended to a fantastic gynologist who recognised that I could have endo. I had my first lap in June 2015 and they burnt away some endo on my rectum but he said it was minimal, he checked all my tubes and fertility and said it was normal, I also had a large fibroid which he removed which was probably the main cause of the heavy bleeding. After the first op I had a few months of pain free, light periods and it was heaven but after that it started to get progressively worse and when I went back for an Mri 3 months later they said I now had adenmyosis. Since then, I was experiencing a lot of pain going to the toilet especially when I was on my period and the paid was excruciating! I had my second lap done on Monday and the doc said it had come back severe and he had to cut part of the endo away on my rectum but again said my tubes were fine ( I think I'm starting to get the picture that it's my rectum that seems to take the hit from the endo!). Recovery was a lot better this time round the trapped wind wasn't as painful and I went for a wee pretty much straight after surgery and I went home that evening, the next day I was up and about and felt fine and then on Wednesday was hit by a kidney infection which probably came from the surgery and have been in bed since! Now I'm on a couple of antibiotics to clear it but I feel so nauseous!

Sorry for my large rant but sometimes it's good to talk to people who go through the same thing as me, sometimes it feels quite lonely when no one around you understands how much it affects your life!

What was everyone's side effects after their surgery? I feel really bloated and swollen and my nipples and stomach hurt which is odd! I guess the whole front of the body takes a blow from the surgery!

I'm due to go back to the doctors on Monday for the proper results, my husband and I are going to try for a baby straight away so I really hope it happens! X

5 Replies

  • Hey!

    Glad you eventually got your diagnosis.

    I recovered better from my second lap which is strange as they did so much more inside the second time around. My side affects were a massive bloated tummy (which made me look heavily pregnant ...oh the irony!!) trapped wind and pain.

    I totally get what you mean about the loneliness - I just don't think people fully understand unless it's happening to them, as much as they might try.

    Good luck with the results! Me and my husband are going to try straight away as well so I have everything crossed for both of us!!


  • Thanks so much for replying! It's nice to hear other people's stories so it dosent make you feel so alone!

    Good luck too! The gyno said to be the best chances of conceiving is straight after a lap so I am going to start with the ovulation kit straight away this month and get trying! :-)


  • Hey! Firstly, i hope you make a speedy recovery! 🙂

    I've been in a similar situation with my endometriosis. I was diagnosed with it 12years ago. I had excruciatingly painful periods, felt naucious and really weak during my periods. It wasn't until i collapsed one day, that they realised it could be something serious. Initially, they didnt detect that i could possibly have endo. The endo spots were removed with laser during a laparoscopic surgery then, however they said the endo with was very minimal.

    Anyway, 12yrs on - i am happily married & have been trying for a baby.

    I noticed a change in my period as my they have became lighter and only last a few days instead of a long week. However, since they were routinely coming every 4 weeks, i thought everything was fine until i started trying for a baby.

    I just wasn't getting pregnant.

    My doctor referred me for a 2nd laparasocopy assuming my endo had returned. Unfortunately, this time things had changed! There was no endo showing during the surgery however, over the years the endo had caused my fallopian tubes to block which means i can't conceive naturally & they couldn't treat it either. I wasn't aware that endo could affect my fertility in this way. Now, I have been diagnosed with primary infertility so I am now pursuing IVF treatment.

    The bizarre thing was, the doctors just happened to check my tubes by an off chance during my laparascopy as initially, i was told that everything was fine. But now everything has changed for me.

    Did your gynaecologist do a 'dye test' to check your tubes?

    I would definitately advise you to get them checked especially if you want to try for a baby as your endo seems alot more aggressive than mine, and it could affect your chances of having a baby in the near future.

    In regards to the gas - it can be very painful. But it will ease out.

    Once again, goodluck for your recovery xx

  • Thanks so much for replying! I'm so sorry to hear about your fertility but on the plus side it's absolutely amazing what they can do now with ivf! I know so many people that have had successful ivf treatment and even gone on to have twins! I never thought I would say this but twins would be a blessing... have the babies in one hit and then finally put an end to all the pain and suffering!

    It's strange how endo can affect people in different ways though!

    They checked my tubes with a dye test on both laps and both times the doc said they were fine so he did say no problems that he could see of me conceiving naturally! I think I am definitely more prone to having my endo around my rectum for sure! Just gone for some blood tests to test hormone levels so I am still waiting for the results on that too!

    Please let me know how you get on with ivf though and I really hope we all fall soon :-)


  • You're right. I have heard of a few success stories of couples having twins through successful IVF treatment. My husband would love to have twins. Infact, its one of his life long desires 😃. We always joked about having twins as my mum has a twin brother! We just assumed genetically we were in a strong position. But with the situation now, we would be more than happy to even just have one healthy child as we have no children.

    Praying & hoping for the best.


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