Removal of abnormal cells/Baby number 2

In a nutshell I believe my endo was caused by the removal of abnormal cells via loop following a smear test. I was diagnosed with severe endo, had surgery to remove 2.5 years ago. We've been trying for 8 years for baby number 2, our son is 10, I'm nearly 40 😞. To say it's a daily struggle is an understatement, I feel like the only person in the world in this position. Anyone going through similar? I feel so alone 😓

14 Replies

  • The cervix is no where near what could cause endometriosis to spread if there was a cut during a smear test or even when they clean up abnormal cells. Your cervix does not contain the uterine tissue that sheds every month.

    Although during your period this uterine tissue passes through the cervix with blood but it does not stick to the vaginal walls. Endometriosis is sometimes believed to be caused by back flow of fluid from the womb into the Fallopian tubes and into the abdomen as to the cervix where it goes naturally.

    If the removal of irregular cells caused your endometriosis, it would have spread through the vagina than externally on the vulva and even skin. It would not have grown internally like what you have been diagnosed with as a stage 4.

    It can however grow vaginally in very rare cases after it has infiltrated the cerix.

    Endometriosis that isn't primary (starts with menstraution) is caused by a c-section where they do not properly clean up the uterine tissue in the abdominal cavity and slowly over time it spreads. Or a puncture to through the womb, and this kind of puncture would require surgical attention immediately because of risk of hemrohaging, infection, and losing your organs. The removal of abnormal cells tends to be done while your awake with numbing cream on the cervix so they can scrape it off, this doesn't require the abdomen to be cut or punctured while you are under anesthetic.

    Your cervix is at the back of your vagina and is like a tube connected to your uterus, you can google a diagram online to see how far away it is. Also look at videos of the merina coil, the cervix needs to be dilated to insert it so it isn't a very big hole at all.

    Please ask to be referred to BSGE centre if you are in the U.K., they will be able to remove the endo and hopefully help you to conceive baby number 2, a cause of infertility could be blocked tubes. I also believe that you are legally supposed to be treated there if your a stage 4 due to the fact that general gynae don't treat it properly.

  • Thanks for taking the time to reply but I had no symptoms whatsoever of endo before having the abnormal cells removed after treatment they all began. Prior to treatment fell pregnant and normal pregnancy. Dr Robert Winston believes there is a link as I do. I have been treated by an endo expert and all endo removed 2.5 years ago in a 6 hour operation. However still unable to conceive and symptoms back 😞

  • It is possible to have endo and have no symptoms. It's also possible to get pregnant naturally with endo and then to become infertile later, when it progresses. It is also the case that even with skilled excision, if you are not using hormone treatments to try and suppress the endo, it can return.

    Do you have any links to the robert winston theory? I can't find anything online.

    It might be a good time to ask for a referral back to the endo specialist (if you haven't already)

  • Thanks for your reply it was on his q&as I've just had a quick look and found this thread that references infertility and cell removal will have a look later for the endo related thread

  • He's suggesting that he thinks there might be a link between abnormal cells and infertility and also treatment of abnormal cells and infertility but that there's little evidence and that even if it is the case, it's very rare. He doesn't link treatment of abnormal cells to endo.

  • There is an endo related thread but I've not had time to search for it. When I find it I'll let you know

  • I agree, he does however say adhesions and growths can be linked to the cells being there, but that could also be related to a fragile immune system and endo is an autoimmune disease.

    One great example is I had no allergies till I got my first period then afterwards I developed a severe peanut allergy where my throat would close up from being in a room among others plus within the past year I've become allergic to all sanitary napkins.

  • Are you sure you had no symptoms because some endo symptoms some of us had no idea about.

    For example I though diahrea, a heavy flow with clots for 16 and everything else was all normal during periods, then it began to get painful after I went on my first birth control pill. And if you know anything about bc pills the hormones can mimick pregnancy and make it grow.

    One thing you need to understand is endometriosis is a progeressive disease, every cycle of sheds and grows like the uterine lining, you were trying for 8 years to get pregnant with your son, that is 2 years after your first. In those 2 years the endo could've blocked your tubes. Endo grows differently for everyone, some stage 4's have it on their lungs while others have it on your tubes.

    You also need to take into context how long ago that smear test was, it takes 10 years for most to become stage 4. Although the disease gets worse with generations, for example teens are more prone to worst endo in early years now.

    When you become pregnant you do stop cycling however afterwards your hormones can go out of wack and in that time frame your o-estrogen can go up and cause the endo to grow chaotically every cycle.

    My mum had no symptoms before her pregnancy besides painful periods in her teens and then after she wouldn't stop bleeding and had an ovarian cyst removed and they said they cleared everything out after inserting the merina.

    Another reason why infertility can be linked to cell removal is because the endometriosis actually grew on your cervix, they tend to see abnormal cells and then remove them b/c they're abnormal. At the same time abnormal cells can also be a sign of abnormal cells within the uterus which you would need a biopsy for.

  • Sorry to hear you feel alone. Endo can certainly do that to a person. Living with chronic illness is a rough thing for the strongest women out there. Look after yourself

  • Thanks so much for your reply, I haven't found anyone in a similar situation to me but there must be, thought I may find them on here

  • Hi maybe post again with IVF in subject? I'm sure I have seen threads on here in past with women with shared experience of what must be very tragic & emotional circumstances of losing a baby and ladies having little miricles. I have not had that experience but have friends that have been through it and cant talk about it. So thanks for feeling brave enough to post about your experience.

  • I realise I left my self wide open for criticism by putting my feelings on here but I didn't add this post to be judged, I know my own body and I know I was perfectly fine before the abnormal cells were removed. I posted in the hope the hope that someone else has been through the same or similar and can tell me I'm not alone in this. I'm emotionally exhausted and I'd hoped posting on here would help 😞

  • Nobody is trying to judge you. We're all trying to live with this disease and to learn. You posted something that I hadn't come across before and I asked for more information, that's all. In terms of living with stage 4 disease, having repeated surgeries, and dealing with the loss of fertility, lots of us are in that position. I am 10 days away from hysterectomy/BSO/excision from bladder and bowel at the age of 39.

    Are you under specialist care at the moment?

  • It is awful I hear of ladies losing fertility to this disease. I was not aware I had it until recieving pelvic surgery after my (only) child. It has been a journey trying to parent with a chronic illness so I have never faced this challenge. Joreilly I hope your surgery preperation is going well.

You may also like...