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Do I have endometriosis? What do I do now?

Hi everyone, this is the first time I’m posting on here. I have been suffering for a long time and I’m looking for advice, help, conversation...

I have been back and forth to the GP, hospital appointments etc for the past 5 years. From a young age I always suffered from bad periods, I was always crippled with pain, could never go to school or work if I was on my period, I would faint, be sick, have terrible bowels. I went on the pill to manage this but the anxiety of getting my periods made me take the pill continuously because I was terrified of having a period.

Fast forward at age 20 I lost my virginity and as soon as I was sexually active regularly I realized something was wrong. Not every time but very often during sex I would get a pain in my stomach (similar feeling to a period pain) which would have to stop me having sex, rush to the toilet with a bucket. The pain would be so intense I would throw up and have to push my bowels and would sweat profusely. I have never been in labour but this is how I would imagine it would be with the urge to push and the pain in my stomach and back. This still happens to me, I haven't noticed a pattern of what makes it happen but I go through periods where it happens every time I have sex and I can go a month without anything then it happens again for weeks, no pattern. When it happens a lot I loose a lot of weight due to how much I’m sick.

A few years ago I had an investigative laparoscopy. There was never a clear result. Doctors had conflicting opinions, tissue was removed but the main surgeon said in his opinion he didn’t think I had it but there was a possibility of stoma endometriosis(I have no idea what this means, it was never explained to me and when I asked other gynos to explain my notes no one knew what this meant).

After the surgery I have been treated as though it’s all in my head. I have been on antidepressants to ‘train’ my brain to not give me pain which hasn’t worked, I have had acupuncture to try help, physio therapy and dilators but nothing has done anything for me.

I’m not sure where to go from here, right now the pain is bad and happening every time I’m having sex and I can’t handle it anymore, the sickness is too much. When I get the pain it’s intense like discussed above and lasts about 20-40 minutes where it is 10/10 pain then for the rest of the day the pain lingers and I’m just so out of energy. I hope I have all the details in here, I’ve never been able to speak to anyone as I don’t know anyone who has experienced the same. If anyone had any advice on what I can do now or just share their experience I’d feel a lot better.

I am 25 years old. I have also heard people talk about surgery’s not finding it the first time and a second one finds something, is this a thing?

  1. Hi . We first just want to welcome you to the endometriosis community. And thank you for being here and reaching out! We are saddened to hear that you have been suffering though. Your story sounds so very familiar to I am sure many of us. You are certainly dealing with a lot and I know just how frustrating it is when doctors dismiss you without real answers, and you are still experiencing pain. I have been there so many times!

    I would definitely consider getting a second opinion. It can be the first doctor doing the lap, truly did not know what to look for and missed any deep endometriosis that can be there. If you have not yet done so, I think the next best steps would be to reach out to an endometriosis specialist. If you are on Facebook, join Nancy's Nook- it is a group. She lists endometriosis specialists and you can search them in your specific area or surrounding areas. Many GYNS are just not trained/qualified enough in understanding and finding endometriosis through surgery.

    Here are also a few articles I found that may have helpful info for you as well! We truly hope you can find answers and relief soon. Do reach out anytime you need to chat, we are always here. And definitely keep us posted on how you are doing! -Kimberli (Team Member)

    https://endometriosis.net/clinical/deep-infiltrating/
    https://endometriosis.net/living/pain-sex/
    https://endometriosis.net/clinical/ablation-excision/

    or create an account to reply.