Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: charliegirl on September 06, 2020, 09:23:10 PM
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Hi all, am sorry to be a pain on here asking so many questions, but I am in really bad pain. Its not an UTI, been tested, not IBS, so thinking about endometriosis, although I am 67, had a hysterectomy for endo a while back, but kept my ovaries. I have been taking soya which can make endo worse.
Any likelihood of this? Thanks.
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Hi charliegirl
I had severe endometriosis and had a hysterectomy but they removed ovaries ( and perforated my bowel but that’s another story).
I’ve wondered about a resurgence of endo and have discussed this at length with my gynae ( top guy in Endo ). He said it can come back after meno but it is rare . Severe endometriosis can also generates its own oestrogen supply but that is even rarer. I’ve no idea about soya sorry.
Just wanted to say hello really as a fellow endo sufferer, it’s a horrible destructive disease and I’m not sure what your symptoms are but if the pain persists you will have to go back to doctors x
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Could you have adhesions from your hysterectomy charliegirl?
Taz x :hug:
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Hi
I’m 46 years old and had two endometriosis operations, one at 25 years old and at 44 and also had a hysterectomy still got my ovaries.
Before my operation the gynaecologist told me my endometriosis could come back again.
I’ve still can have problems with my ovaries and can’t go on HRT, I’ve had 6 ultrasounds since my hysterectomy. The last time I’d have my ultrasound they told me my pain was adhesions.
Have you seen and talked with your doctor?
:bighug:
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Hi, trying to get an appointment at moment!
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Well, dr says unlikely endo but had a tiny bit of bleeding in vagina so doing a pelvic scan to find out what’s happening. Hope this gets sorted out as feel so crappy!! :(
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When you had your hysterectomy did you keep your cervix?
Taz x
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Yes I think I did Taz.
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I just wondered when your last smear was?
Taz x
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Havn’t had one in ages Taz. Will have to ask.
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You don’t usually need a smear when you had a hysterectomy. My doctor made me ask the gynaecologist as this isn’t always the case. But I’ve had one after when my doctor wanted to rule out something before she considered virginal atrophy.
Good luck with your pelvic ultrasound. And please let us know how you get on.
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Well, doc did exam and said it was tender, and cervix ok.Having ultrasound to rule out ovarian cancer!😟
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You don’t usually need a smear when you had a hysterectomy. My doctor made me ask the gynaecologist as this isn’t always the case.
If you retain your cervix then you definitely still need cervical smear tests as the cervix can still become cancerous. If the cervix is removed, as sadly mine was, then there is no need for cervical screening.
Taz x
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I had hyst for.endo but ovaries removed and on oestrogen only hrt it came.back even thoifh i had excision too
I now use progesterone too
If you didnt have full excision at time of hyst very common to come back
Firstly soya unless organic is a.no no with endo diane sheperson a endo nutritionist told.me this.
An ultrasound will be bog useless you need a pelvic mri and to see an endo specialist
Where are you based ?
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Am based in Blackpool.
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https://www.lancsteachinghospitals.nhs.uk/endometriosis-centre/
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My GP seems to think I am too old for endo as well?
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GP seems to think am too old for endo?
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Have you had a look at the UK Endometriosis site? There might be some advice on there? https://www.endometriosis-uk.org/
Taz x
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Just had a look, thanks Taz, I seem to have all the symptoms, but it would appear that they can mimic IBS, although I do not have any diahrrea or constipation to speak of, do have much bloating tho😕
As I said, the gp seems to think I am not producing estrogen, but I had endo in my womb at aged 63! Who knows!!
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Did you see this part "How common is recurrence of endometriosis after having a hysterectomy/menopause?
This is not common. It is more likely after hysterectomy if the ovaries have been left behind with or without disease. This can happen sometimes because endometriosis surgery can be very difficult. Endometriosis after the menopause is thankfully rare as a result of markedly reduced ovarian oestrogen production but can occur when HRT is used"
It can happen, though rarely, so has your doctor offered to test your oestrogen level to see if it is higher than would be considered normal post menopause? That might be the way forward if not.
Taz x
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Yes he has Taz.
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That's reassuring :)
Taz x
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Having both IBS and Endometriosis, I found the symptoms similar but different. I would have no problem knowing if I had Endo or IBS.
For me, Endometriosis was sharp stabbing pain, near my ovaries sometimes it could be more constant but the pain was low, on one side of pubic hair area.
I had Endo two times, IBS only a year ago, and I knew my IBS symptoms was definitely not Endo.
Where I found IBS to be like a sore stomach ache that would cover from the belly button down.
My doctor was a big help for both of those problems.
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Well am having a can soon so should be able to find out.
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Well... My latest is worrying how my eyes were deteriorating. Walked around mumbling and worried for some time until I realised I had placed my second pair of glasses over my first pair. Talk about double.vision 🤣
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Has any1 been watching Kate on the programme that can 3D the whole body scanning process which is then shown to patients? Fascinating. Means that surgeons can see into the area where they need to operate.
Tonight is was about Miriam who had suffered intense increasing pains for 10 years, finally getting a diagnosis of endometriosis. She had been told to 'live with it', given several coping strategies: however, when she had seen the 3D effect she opted for surgical intervention.
Why does it take so long to diagnosis .......... and who has the 'right' to tell any patient 'to live with' what ever they are complaining of :bang: :bang: :bang: Watching the complex operating of the various scopes etc. exploring and removing the areas, including where the endometriosis had sealed the vagina to the bowel wall ..........
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I agree CLKD, it’s terrible when they tell you to live with it. I was lucky both times when I was operated on it was for cyst on ovaries, and while doing that they discovered endometriosis. In saying that on the last operation they abandoned the operation when they discovered endometriosis. I then had to wait another year and a different surgeon and hospital to operate on me. Even then the surgeon told me going into theatre that he only had a three hour time slot, and if the endometriosis was very bad he would abandon the operation too. Lucky it wasn’t that bad, from my understanding in Queensland Australia there are only two surgeons that can operate on bad endometriosis.
I got told to live with piles after 11 years they did improve and now my fissure problem I’m being told to live with (which is slowly becoming more often). I go back April 20th to talk again to the surgeon >:(
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I wonder if World wide it's because we are short of Surgeons, Anesthetists, Nursing Staff ?
This particular Surgeon on BBC last night does nothing else except endometriosis surgery. Is it a 'recent' disease ? i.e. since Victorian times?
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I would say it’s definitely a shortage of surgeons that can deal with bad endometriosis. And I wouldn’t think it’s a newer disease, I think it’s taken them a very long time to even understand endometriosis.
I think it’s a silent disease, I had endometriosis back in 1999. They probably told me I had it as they found it and operated on it as well as the four large cyst. But I never asked what are you talking about and asked enough questions. Fast forward to 2015 and I was having cyst problems again and the gynaecologist as me have you had endometriosis. I ask what is that, I had no idea, or ever heard of it. And so I said no after she explained to me what it was, but found out a couple of years later that I did have it back in 1999.
Thankfully it’s more talked about now and hopefully more specialist surgeons will be trained. I believe at least one of my daughters have it if not both.
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It's dreadful when it gets a grip :-\