How do you live with chronic endometr... - Mental Health Sup...

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How do you live with chronic endometriosis pain?

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I'm 45 years alone & I picture my life so different. I lost my virginity at 36 by being date raped. Only had one boyfriend & he abused in every way, mentally, emotionally, verbally but never physically.

I haven't had a job in 6 years and atm I care for my mum. I look normal. You can't see the pain. I live with daily chronic pelvic pain that effects all area's of my life. Endometriosis has made my life a living hell.

Now I'm going for a hysterectomy but told ahead that it won't take my pain away. That the endo pain will always be a part of my life.

I have chronic depression & general anxiety but I try not to feel sorry for myself. I go out & see couples & babies that will never be a part of my life. I have no friends, no job & never-ending loneliness.

I feel as though my life has already passed me by.

Sorry just had to get it off my chest.

17 Replies

Have you been diagnosed ?

Try ENDOMETRIOSIS UK Website for support and information

Have you been able to talk out what happened to you by your Doctor arranging any Therapy. Were the police informed at that time.

Did the attack relate to your condition now ??


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Hidden in reply to borderriever

Yes I've been diagnosed with endometriosis for 6 years now & underwent a laproscopy. Unfortunately that procedure made my endometriosis worse & I then felt daily pain. I live off diazepam to function somewhat but that is not a long term solution. Plus it only takes off the edge of the pain.

I never reported the rape, I thought it was my fault, I went into shock & looked outside the window while it was happening thinking about what groceries I had to get from Coles the next day. My mind protected me the only way it knew how.

I only admitted to myself two years ago that I was raped. It wasn't brutal. I got too drunk, I said no but he didn't stop. I repressed it & until one day, for no reason my mind was ready for me to handle the truth. I still feel as though it was my fault.

I didn't report it to the police. I didn't tell anyone. He lives in Ireland & I live in Australia. Nine years have passed.

borderriever profile image
borderriever in reply to Hidden

No matter where you live you need to come to terms with the attack if not already Especially if he cause so much damage to you


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Hidden in reply to borderriever

I've come to terms with it awhile ago.

It's living with chronic pain that I'm trying to accept. To find my way in this life, to be kinder to myself & others.

I don't have to all the answers today & I'm at peace with that.

borderriever profile image
borderriever in reply to Hidden

I suffer chronic pain I have had since around 1980, I am seventy now and am still suffering. It is no good being a slave to pain there are ways your doctor can help you over time. Pain with discomfort is a very lonely problem that is made worse if you have the problem of now relief. There are ways of treating pain and that needs to be explained to you, you will feel better for that and in turn will help you move on in more positive ways

If possible do not feel like you have to suffer no-one need to live with that. I would hope you will begin to be more at peace as you move on to a better attitude in your life

Keep a hold


goldieoldie profile image
goldieoldie in reply to Hidden

Hi Loststars,I,in can only imagine the past 9yrs of your life ,my heart goes out to you ,having to suffer both mentall and physically pain.....IM glad you had the courage to share it on here.......Please dont blame yourself for the Rape,its taken a good part of your life ,dont let it take anymore,,,,I have had one or two very early experiences sexual in nature ,and almost was a married man who I realised was a paedeophile,though I was too young to understand ,but have since educated myself on quite a few things ,and my friend again many years ago was raped on two seperate occasions ,she too had got drunk---------its essential that you get this event eradicated from your mind .and in my case it has made me stronger ,but havent told anyone really ........There are Womens Rape crises centre ,where you are .and they are trained to listen without judging ....have you read any sel-help therapy books ,Dorothy Rowe was also sexually abused,cant remember,she has a whole lot of sel healing books---------I can ramble on forever but the gist of this is this person took advantage and I think you said drugged !------You are a very brave person and having to pot up with E ndometriosis-I think theres a forum on HEalthunlocked for it!My life is not the best ,and I am caring person and know just a little about mental anguish ,Anxiety,some for you is going to improve your attutude and how you expressed your letter-----and think of thay lovely wee dog s face its nice ==if you want PM me ....hoping this helps ,I also take small amounts of diazepam,,,another story.

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Hidden in reply to goldieoldie

Hello goldieoldie,

Sorry to hear about your near experience & your friends repeated rape. I can't imagine. My heart goes out to her.

The rape does not have a hold on me but it made me scared of how little I'm willing to accept in life. Bad childhood etc. I look at the rape & think as far as rape goes mine was pretty good. I accept the rape because I use to think I was nothing & almost felt gifted by him that it wasn't brutal. While other women want roses & diamonds...I'm happy to just not get raped that bad.

Now that is f**ked. That worries me. But I've grown as you do & I realise I am everything, if only to me. That is where love should start with yourself.

Please don't misunderstand me I don't condone rape or cohersion of any kind against children or women. If it was up to me, all rapist would get it cut off.

I have never read books about rape because so many other things have actually cut me deeper. That experience was not the worst. I am actually use to being treated badly & only now am fighting to be heard. I'm a feminist & I know nothing can break us. I will always get back up.

I have read an interesting book, "How to be sick" by Toni Bernhard. It's about how to enjoy life when your life is unexpectedly changed forever by an seemingly incurable illness. Sounds depressing but it's not. I'm a carer for my mum with two brain tumours & it's written for carers too, so it interested me. I'm not Buddhist but find what I call the brain training exercises explained in the book more helpful to me than CBT.

As you can see I can ramble on forever myself. Would love to pm you if you like but I'm new this forum ,& will admit I am still clueless on how to actually send private messages lol.

Hi sorry to hear about your pain.

My ex wife was in such pain,I litteraly dragged her down the docs giving them what for

A year later twice she had it lasered and now so much better

There was somet about the condition on day time tv saying it can take 8 yrs to get diagnosed


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Hidden in reply to Tiggerakafidgity

Mine took about 11 years to be diagnosed. Thank you so much I didn't know you could have it lasered. It must cost a fortune. Thank you for understanding, sometimes when I tell the doctors I can see it go in one ear & out the other. Sometimes you just want to be believed 🙂

Tiggerakafidgity profile image
Tiggerakafidgity in reply to Hidden

Hi ya

It didn’t cost anything as was done on the nhs which is free if you live in the not sure where your from.

It took two goes of laser surgery.

She would be bent over in pain 24/7 so was a relief to have it done.was extremely sore afterwards though

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Hidden in reply to Tiggerakafidgity

I live in Australia & am on the public health system. Jumped through so many hoops & completed forms, tests etc....only to go through a month of back & forth requests for more information or more detailed medical history. Took 3 months to see a gynaecologist which for poor people is really fast.

Still you have definitely given me a option I never knew about. I thank you for that. With knowledge comes power :)

So sorry to hear how things are for you. I too lost my virginity to a rapist. It was similar in that I was on a "date" and it went too far. He wouldn't turn back despite me telling him to stop. I was 16 . I was in agony. I never told anyone. I thought it was my fault. I also thought it wasn't a big deal . it was only later in life I got divorced and although it was my decision I just didn't cope. I went to see a therapist and some time down the road she asked me if I had had a loss early in life. I then told her what happened. She told me I was a child and it wasn't my fault and although it sounds trivial it was a revelation

Like you said you were over it and I thought I was but up until then I'd had that in the background, my subconscious if you like. It helped me to process it much better with help.

Anyway I thought I would share that because that was my experience and I hope it may help a tiny bit. You are supported here

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Thank you for sharing that experience with me. I know it has effected me, how could it not. I was born broken. I feel that I can't be loved. That I don't deserve to be treated nicely. My biggest joy in life is when I treat others nicely. But for someone reason I feel undeserving.

I've been to physicatrists, counsellors and numerous therapy.

I am lonely but men seem to treat me meanly. They think I'm a snob or up myself, when really I'm shy out of my anxiety. When I'm attracted to a guy I feel scared & I know that's not normal. I don't know what a healthy relationship looks like but inside I'm scared. I can't believe that anyone could truly love me, just for being me. All I ever wanted was just to be "enough".

I'm sorry that you had to experience that so young. But I love that you are still around & it didn't beat you. You're a survivor & you should be proud of that :)

Hi LostStars13, in regards to your Endo there's no hard and fast rule that you will continue to suffer so horrendously post hysterectomy, I was diagnosed in my early twenties and it was 26 years later that I finally got the hysterectomy I had been begging for by which time it had spread to my bowls ect.... From the moment I woke up post-op I was in heaven the very best decision for me, I had my overies taken too which meant HRT but that's working fine for me. 6 years have passed and honestly whilst it's not gone completely and I still have issues for me it's not a fraction of what was there before. I do hope that you find some peace of mind and joy in life. Thanks for sharing.

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It's such a difficult subject as each case is different & there's no clear set rules. I think Endometriosis is still in the baby stage in regards to the research done & the specialists understanding of how it works. When I first was diagnosed they said they don't know how Endometriosis happens, now it's been stated to me that we're born with it. There's 4 stages or levels & it's taken 6 years for one gynaecologist to admit there is no correlation to the amount of endo to the pain level you feel. I have very little endo to my knowledge but experience chronic debilitating pelvic pain daily.

My gynaecologist doesn't think the hysterectomy will help my pain because he's not taking the endo out. Endometriosis feeds off estrogen but does not need the ovaries to produce it.

I got Endometriosis near my colon & my left ovaries is glued to my fallopian tube.

At this point, I don't believe I have much to lose which is why I have agreed to the operation.

I thank you for your kind words & sharing your experience with me. I have an older sister but she doesn't like me, so I cannot look to her for her wisdom, experience or support.

I know whatever happens I will be stronger for it. :)

Hi,I am glad to hear from you again and for you to share your knowledge of that horrible conditionE......It does seem that having a hysterectomy ,is better than doing nothing.....have I got that right.... Strangely enough I did look upLouise L. Hay book title You can heal your life-----at the back is an alphabetical list of different conditions ,like E...Cancer and a whole range of things----im sorry ,just got up and my stress levels trigger and blocks my thinking process-(im getting on in yrs.though I am not convinced its just that,,,,,,,,,basically we have to change the mindset -----so if your feeling ,insecurity disappointment and frustration-and replacing self-love with sugar .Blamers-replace it with as you said the last part of your desription, -Iam both powerfuland desirable,,,,,,,ItsWonderful to be a Woman.I LOVE MYself and IM fulfilled.I quoted her words after the heading Endometriosis......Meanwhile ,I feel you need to find yourself -------could I suggest some form of course on Healing Spiritually----such as Aromatherapy ,Acupuncture Meditation,Yoga--theres a whole list of things that could distract you from the pain of living during this Lockdown--------and being on this forum ,hopefully can help -----Remember the word Dis-ease----stems fromMind over Body----Spiritual beliefs have helped me enormously,,,,,not my siblings -1 of if big sister fails to support WE can,and you are buiding on your strengths,and hopefully a little light banter too improves our well-being.--this is me ,i mean I have a habit lately of staring something and forgetting ,as this effort seems;The book is you can Heal your Life,by Louise L.Hay,,,,,she has quite a lot of self -healing bks which basically is learning to love yourself-by forgiving(Yourself).

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Hi again, I am a bit of a tree hugger & just love nature. Even I only go to the park its enough, I love looking at the tree's, flowers & watching the dogs playing at the dog park is my favourite. Their exuberance & joy can't help but lighten my heart. I've never owned a dog & it's on my bucket list. But the vet fee's are so expensive & it would not be responsible of me to have my dream, if I can't afford to look after it. I have my baby, which is my beautiful Misha (an abandoned cat). My idea of heaven is just to be surrounded by all my favourite animals. My love for animals is just endless & continues to grow each day. It's such a gift feeling that way.

I am a spiritual person & am looking into starting free yoga class lessons at a park nearby. I already meditate but mostly because I can't sleep. One of my mentors is Wayne Dyer & even though he's passed away, I find listening to him really helps me.

Laughter is important & I absolutely love Ricky Gervais, he's helped me out of bouts of depression, more times than I can count. I have a sick sense of humour & don't get easily offended by jokes.

So when I need a laugh, I turn to Ricky, Seth MacFarlane (love Family Guy) & I recently discovered Jo Koy stand up comedy.

I've had depression/anxiety for 30 years so yeah I know my triggers but I also know the steps I have to take to get back up. It's tiring though & wish sometimes just for good mental health.

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