Such cock ups : I suffered with... - Endometriosis UK

Endometriosis UK

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Such cock ups

Sootyd17 profile image
19 Replies

I suffered with endomitriosis. I went to my gp I called gps to my home .They usually said I had constipation which I took relief from.One month I was so bad yet again called gp to visit different one every time.this one said it's my appendix and rushed me in I was 29 . I wasn't worried as the pain was off the scale.

Operated midnight, on weakening they said! " we checked appendixs they were fine but removed anyway,surgeon saw a little bit of blood in tum so he opened you from your belly button right down to your bikini line. "He decided it was a Gynecologist problem so stapled me up. The 1st thing they ask u when being admitted is " when was your last period" which I replied " I'm on it now" so the boy of "blood" was my period but surgeon didn't check.. all this for 0 . In total I had 54 staples yes 54 staples... for absolutely nothing.i continued to be ok for 18mths then it started up again . I phoned gp out who said straight if I think it's endemitriosis. Il refer u to a gynicologist.

Saw the gynacologist as I was still suffering horrendously .

He said to try a nasal spray to cut if my ovaries every month.The Nasal spray drove me crazy and had headaches from hell . Went back to see gyni who said only option is hysterectomy. I was only 34 had one child. No plans for others not as of that moment. He said it's the only thing that would work. I couldn't function every month so felt my only option. I had the op, 2 mths later the pain had come back even though no periods the pain was there every month! Ur again seen gyni who suggested removing ovaries. Few mths after hysterectomy.took both ovaries said my endemitriosis was living on some of my organs which he scraped off.

I was told I would have a surgical menopause . I did I went off my trolley every symptom of menapause hit me like a ton of bricks so at 34 I felt like I was in my 50s it was horrendous but cured my endemitriosis finally.

I mourned for the children I couldn't have I suffered so badly and nobody apologised for screw ups Re; my 54stitches.

Don't sit bk fight . Good luck to all u poor sufferers.

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Sootyd17 profile image
Sootyd17
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19 Replies
Tia1991 profile image
Tia1991

Hi wow I'm so sorry to hear you have been through so much and I can only apologize for the mess that the nhs but you through. I suffer from endo felt like giving up a good few times but its only my husband that has kept me sane and fighting. Your story has brought a tear to mine & my husband's eye we are truly gutted for you. I want a hysterectomy but as I'm only 26 my GPS won't do it. I'm glad that you have got rid of that horrible thing eventually and wish you the best health for the future. Take care. Xx

Sootyd17 profile image
Sootyd17 in reply to Tia1991

The only known cure is to remove ovaries & uterus . It disappears for ever.

They have got dif drugs that may help you need to find out do not suffer in silence. X

Sootyd17 profile image
Sootyd17 in reply to Tia1991

Please don’t have a hysterectomy . No body know what’s going to happen in the future. Your so young . X

Nikki84 profile image
Nikki84

Wow, really sorry about what you have been through, it really makes me mad that doctors just offer a hysterectomy and think that is it, as to date there is no known cure for Endometriosis, all a hysterectomy does is slow the disease down and it can reappear on other organs of the body, I hope that it really does stay away for you as you have been through so much already and I hope you sued the arse off that doctor that did that to you, best wishes

Sootyd17 profile image
Sootyd17 in reply to Nikki84

If they remove the ovaries you endimitriosis will go but you will have a surgical menapause that can be helped .

Sootyd17 profile image
Sootyd17 in reply to Nikki84

25 yrs ago now couldn't sue. And it stopped the endometriosis . As they got rid of the ovaries. Being pregnant helps stave it off for few yrs

Sootyd17 profile image
Sootyd17 in reply to Nikki84

Sorry if you have uterus & both ovaries removed , u r then free completely of it. But will suffer surgical menapause. That lasts a few yrs but is treatable.

Sootyd17 profile image
Sootyd17 in reply to Nikki84

Your wrong! Uterus and both ovaries removed completely stops the endi. But there will be a surgical menapause.

Sootyd17 profile image
Sootyd17

It was 25 yrs ago now. I couldn't sue or do anything back then. If the ovaries are removed it disappears. having a child gives you release..

Nikki84 profile image
Nikki84

Oh right sorry thought you still might have your ovaries, I still find it unacceptable though that this is the best they can offer, surely in this day and age you can get better treatment, but then again look at what is happening to thousands of women, doctors not taking them seriously or not wanting to find out what is going on, it's a shame it has to come to this

Tia1991 profile image
Tia1991

My Dr told me to have a baby to give me a few year break of the pain but I told him I'm not interested in having kids he said you do what you need to I couldn't believe my ears Im not having a baby that isn't wanted to get a few year pain free I'm desperate but I'm not cruel. I'm 26 so dont know what to expect or anything about it really but can I ask how long did the menopause go on for? Xx

Sootyd17 profile image
Sootyd17 in reply to Tia1991

To go for a complete hysterectomy inc ovaries. U will start the menopause over the coming days months. It last several yrs and can be tough it really can.

Personally your to young in my opinion. Don’t have babies if your not ready.

If it’s bearable then try to work with it. X

Lulububs profile image
Lulububs in reply to Tia1991

Thats absolutely unbelieveable! It can only come from

A man “

Have a baby to get rid of ur pain”.... some people do not want

Children or a unwanted one at that time just to have pain free existant.

That ridiculous....

There are lots of things that can help endo, lots of supplement , endo diet , being healthy, pain meds, pill , tranexamic acid and lots more to just say have a kid is ridiculous and also to just say have a hysterectomy , again only a man can suggest ripping half ur insides out!!! I saw a lady gynae and she said she would never suggest a hysterectomy until u tried everything else Possible.

emmab178 profile image
emmab178

Horrid story but glad you are now having a better quality of life.

One word of warning though some women who have hysterectomies still go on to have pain and symptoms. If they leave any endo in there it will start producing its own oestrogen and continue to feed itself even though the ovaries are removed. It might not cure all cases and should be seen as a final option after all others are exhausted.

Sootyd17 profile image
Sootyd17 in reply to emmab178

Sorry but when both ovaries r gone the endi is gone. It can only produce if ovaries r kept.

It can’t grow without your ovaries. Trust me on this 😊😊

emmab178 profile image
emmab178 in reply to Sootyd17

It can if significant endo is left over. The endo produces its own oestrogen if there's enough of it will feed itself and continue to grow.

This article suggests pain will return in 15 out of 100 cases after hystectomy.

uofmhealth.org/health-libra...

Many more articles on the net aswell.

Sounds like all yours was removed which is great news.

Sootyd17 profile image
Sootyd17 in reply to emmab178

No ovaries no endi. Period!

Sorry !

Sootyd17 profile image
Sootyd17 in reply to emmab178

Unless you are given estrogen it dies. Anything that mimics ovaries can keep the endi going.

Tia1991 profile image
Tia1991

I've had it for 12 years I can't say its bearable or I'd be lying I can't cope with this in my body any longer I thought with the injection it was going to get better which for a while it did ease of but the pain is back and I've had enough of this. Stay positive it will be fine bored of hearing the same bull of people who know nothing. Sorry to rant but I feel its beating me I can't think positive anymore done that for too many years I haven't got a life. Scared to go out on my own like I did the other day and a man saw me on the floor in agony and gave me a lift home coz I couldn't walk I had no choice he was gonna ring the ambulance I said no they will give me paracetamol and send me home it put me in danger it was raining I was on my own my phone was dead had to hope the guy was a nice bloke which luckily for me he was. I know you all understand how I'm feeling I haven't been on here for a while as been feeling low and didn't really want to rant or bring other people down with me. Take care xx

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