THIS IS A QUESTION I HAVE BEEN SCARED TO ASK

I have stage 4 endometriosis, bowel,bladder etc involvement. I had ovaries removed and hysterectomy. I live in constant pain, cant work, can barely walk, take around 40 pills a day, life is hard.

I know this story is similar to many of you out there, what I don't know, what I have been to scared to ask, to talk about with anyone is this.

When I was in hospital i was asked by my doctor if I had been sexually abused as a child, My answer was yes, I have never disclosed the age it started or how long it lasted, not to anyone. I have always been scared that my family would see it, my brother had sex with me, he is a bit older than me and so was developed. As far as my parents are concerned it happened once which was terrible for them. The truth is I was 7 when it started and 11 when it stopped. It happened periodically, sometime multiple times a week, sometimes it would be months apart. The number must be in the hundreds. He isn't a bad person, I have never spoke to him about it but I have forgave him. It took me years and I hit self destruct many times in my twenties and early thirties.

I had problems with heavy periods from the start and I had miscarriages after years of trying for a baby, all because of the endo.

Ever since the doctor asked I have wondered if the endo is related to the fact that my body wasn't developed enough when he started. My husband is very supportive and comes to all my appointments so I can't ask doctors, he know about what happened to me and hates seeing the way I am now, in so much pain all the time. I don't want to destroy my family, not the relationship I have built with my brother and certainly not the love I have for my husband.

So I am asking the question that I have been to scared to ask for years, about a subject that is difficult on so many levels. Is my endo because of what happened all those years ago, is endo common in people who had sex at a very young age. I know its a hard thing to ask and a harder thing to answer, I'm not asking you to disclose things you dont want to discuss, I just desperately want to know if there is a link. I am going to be brave and post this and pray no one that knows me will ever read it and know its me.

9 Replies

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  • Oh hunny my heart breaks reading this, please don't think any of this is your fault. It's not right what your brother done to you and maybe you should speak to a counsellor? I just want you to know the i also have endromesosis which was diagnosed at the age of 23 but i never had sex before then. So please don't think the two are linked. I feel like you should speak to someone about this because it's probably affected you mentally​. Sending you big hugs. Xx

  • Vonie, I shed a tear reading your story. It's not your fault. They don't have answers for things like "how did I get Endo?". When I had my first lap, I was diagnosed with Endo. It had done a terrible amount of internal damage and I was having a lot of monthly pain which was getting progressively worse. I was always told by my GP it was IBS, period pains or Kidney Infection After my first lap I had pain about a year later, and went to my local hospital. A senior consultant at an hospital said to me "well, that's what happens when you get an STI and do nothing". I told him he needed to get his facts right and not make assumptions as this wasn't the case. I hadn't ever had an STI, I only had 1 partner, and I didn't sleep around. He couldn't get out the room fast enough. After I complained, another consultant came in and said "sorry, but your problems have been cause by the Endo and we don't know what causes this".

    Please don't think it's your fault... any of it. Some people just get these things and there is no reason. Glad to hear your husband is supportive. Big hugs xx

  • Hi I'm so sorry for what have gone through and still going through. It is definitely not your fault. There is evidence to suggest it is something we are born with, a faulty gene or mutation or something. The abuse you suffered would not result in endo so don't blame yourself.

    I do agree that it would be a good idea to get some counselling.

    I would also like to say that you are one very very brave lady for sharing your story with us , and you should never ever feel ashamed but proud of yourself, because you are still here fighting every day . You have my utmost respect for that and any support I can offer you I will gladly give.

  • Again I reiterate it isn't your fault and no one knows what causes endo. Your doctor was wrong to put such thoughts in your mind.

    Get yourself referred to a bsge specialist clinic as they will be able to help you. You shouldn't have to live in that pain.

    Good luck.

  • i was abused as a nine yr old. Even when i was diagnosed they suggested my pain was psychological because of my abuse

    i believe there is no link it is the Endo. Don't be made to believe it is no other than a very sad coincidence. Its hard to have endometriosis alone let alone the other psychological scars u have to live with. Take care & if i need to talk at any time message me xx

  • i want to thank you ladies for taking the time to answer me, you have no idea how much it means.

  • Again I am so sorry to hear what you went through. You are so brave for not telling your family what actually happened and for having built a relationship with you brother.

    I was diagnosed at 26 and wasn't sexually active until my late teens. Hope this helps xx

  • I am part of a Facebook group called Nancy's Nook. You should join. There is all sorts of accurate information about endo. She made it to educate people, including doctors. I just read there that although some have speculated that there is a link, it is totally false. A doctor who still thinks that is undereducated to a detrimental degree. They have found babies in the womb with endometriosis!! Which causes one to think it must be genetic. Which sucks that we were the ones stuck with such a horrible thing, but proves it wasn't out faults in any way.

  • No one should have to go through what you went through. I have a friend who is a survivor of abuse by her father.

    I wasn't sexually active until 19 years of age. I have stage 4 endo affecting my bowel, ovaries and have adenomyosis and lots of adhesions. I hope you have got support for what you went through. My friend has had a lot of counselling and it has helped her.

    Take care and hope you get the input you need for your pain. There is so much ignorance out there about endo. Take care xx

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