Endo is completely ruining my life!

I am an only child due to this illness, my mum had it so bad she nearly died giving birth to me and had a hysterectomy straight after.

I have been in denial for a few years of having it myself, doctors had told me I had a pollyp then HPV (I have been vaccinated) but deep down I knew they were wrong. I am the same as my mother I have endometriosis. Started with pain and bleeding durring sex now to pain when I use the bathroom, I had been on the pill since I was 12 (due to bad period pain) and my gyno told me that was good because it helps prevent it from getting worse, however the lining if my endomentrium had become so thin that it was bleeding at any slight touch causing a black period a week before my normal period, she told me to stop my pill for a few months to let it grow back and then have the mirena IUS inserted as it is the best treatment for this illness. I stopped my pill for 5 months and the black bleeding started again, went and had the mirena inserted (seriously hurt) and I have now had a black period for 3 weeks and cramp. I feel so very depressed as I just want this to end, u use to be so vibrant and full of life and sexy but now if feel dirty and when I become aroused I am in pain, I cant be intimate with my partner (who is the best guy in the word) it is a reall strain on my relationship. I just wanted to be normal.

Does anyone have any advice, I dont want to be on pain killers for the rest of my life, is there anything I can do that will make md feel even slightly normal?


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6 Replies

  • Hi you are not alone, I am with you on that one as to say it is ruining my life because it is. I think everyone on here feels the same. Why don't these doctors realise the impact it has and start to research into a cure ASAP, they disgust me.... I am sorry for you as you are suffering so much and cannot be of much help as I don't know where to turn now myself after 4 ops and no better off. Just to say really if you feel like asking any questions do not hesitate to put them on this site. X

  • Thanks I am sorry to hear you are the same, I haven't had any surgery yet but the symptoms are terrible. I really hope they do something soo as it is not my fault but is also not fair on my partner, he is doing his best to be understanding and really does love me but he didn't sign up for a sex free relationship and I feel like I am being a bad person for not telling him to go.

  • I understand hun. Its hard for the guys too. My fella is very aware that intimacy causes me a lot of pain which puts him off. Im lucky he still with me tbh. Its not just the sex but general things tire me or I cant do things due to pain. I have bad fatigie so days off really are jus for recovery. We dont go out anymore much as even the weekly shop is hard work. I asked him when I got diagnosed if he wanted to leave.id understand but hes still here. X

  • It sounds like you have a lovely guy. Mine is pretty good but us honest in telling me it is shit, which I feel guilty for which then makes him feel guilty for being honest, it is a vicious cycle. I sm still pretty active and am only really in pain durring my time but that seems to be more often than not.

    I am really sorry to hear that you are in that much pain, makes me realize I don't really have much to complain about in comparison. I hope something can be done to help you xxx thank you for your reply, I wouldn't wish this on anyone but I am glad to know I am not alone.

  • Always here for support hun. And im currently on zoladex for my treatment but suffering alot with side effects. Its not something we should have to deal with alome. X

  • Thanks I really appreciate it xxxx

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