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Endometriosis

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head

Not the most lively topic I know but does anyone else on here suffer with this horrific condition on here?

Any advice for pain management, heat pads, tens machines etc?

(For all those that say, "ask somewhere more appropriate", I have done and am asking here as well, it doesn't discriminate just because we are on Fab)

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By *ries AngelWoman
5 days ago

Bournemouth

My daughter has it and recently had an operation (her womb was fused to her bowel). Took years to be diagnosed but once diagnosed by a hospital consultant it moved quickly. Until that point she was instructed to stay on the pill but was always in pain and nothing really helped x

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By *elix SightedMan
5 days ago

Cloud 8

❤️❤️❤️❤️

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By *inkShyWoman
5 days ago

near Windsor

I do, and it's debilitating at times.

Mine eased somewhat with the pill (Cerelle), I take naproxen and codeine for pain, probably too much. Hot water bottles sometimes help, as does ice packs. Omega3 supplements and magnesium.

A huge difference when I started seeing an osteopath. Walking helps as sitting makes it worse.

Haven't tried a tens machine. ❤️

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By *uri00620Woman
5 days ago

Croydon

2 surgeries, the pill, naproxen. Then lots of hot water bottles.

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"My daughter has it and recently had an operation (her womb was fused to her bowel). Took years to be diagnosed but once diagnosed by a hospital consultant it moved quickly. Until that point she was instructed to stay on the pill but was always in pain and nothing really helped x"

Oh bless her, I'm so sorry. Has the surgery helped?

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"I do, and it's debilitating at times.

Mine eased somewhat with the pill (Cerelle), I take naproxen and codeine for pain, probably too much. Hot water bottles sometimes help, as does ice packs. Omega3 supplements and magnesium.

A huge difference when I started seeing an osteopath. Walking helps as sitting makes it worse.

Haven't tried a tens machine. ❤️

"

I already use an osteopath for other issues but definitely overdue another visit. Hopefully she can help ease some of the pain.

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By *porty_and_NaughtyCouple
5 days ago

Swansea

My ex wife had this, we ended up paying a private consultant who agreed she needed a hysterectomy. The NHS had continuously avoided this, shuffling her back and fore between gyno and bowel specialists as her symptoms were IBS like though in sync with her cycle. The hysterectomy solved it for her though I understand this isn't always the case.

I hope this is ok to post mods (given the use of medicinal cannabis now) but when it was bad, about the only thing that really helped her was cannabis. I know you can now get this prescribed for mental health conditions, no idea about endometriosis. As above, hers used to trigger IBS type symptoms though she has since said she believes some of what she suffered may have been psychosomatic - her stomach would swell and bloat within less than a minute of eating food, long before it could have got near sections of her bowel that were affected and she believes this was why the cannabis helped - I can't comment and neither of us are medically trained. I hated the smell of the stuff but it certainly helped her.

It appears to be a disease that affects different people in very different ways which makes sharing coping strategies difficult. It certainly was hell for the 5 years or so it took her to get diagnosed and operated on. She also found she was unable to take HRT as this caused the symptoms to return so menopause was sudden and quite sharp though the symptoms luckily only lasted a year or so.

P

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"2 surgeries, the pill, naproxen. Then lots of hot water bottles. "

That sounds awful, I'm sorry. I tried naproxen, doesn't work on me unfortunately. Do have other painkillers that help, just feel like I'm starting to rattle when I walk with the amount of painkillers I have to take sometimes.

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By *inkShyWoman
5 days ago

near Windsor

My friend had it, she had a full hysterectomy at 30. My cousin has it and has begged for surgery, now is told there is a checklist and they won't consider you unless you have done everything they tell you including the pill, the coil etc

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By *inky_couple2020Couple
5 days ago

North West

I've been on ProStap to stop my ovaries working for just over 2yrs now and will be having a hysterectomy soon. Other than ProStap, nothing I tried has made a scrap of difference

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"My friend had it, she had a full hysterectomy at 30. My cousin has it and has begged for surgery, now is told there is a checklist and they won't consider you unless you have done everything they tell you including the pill, the coil etc "

It baffles me why they are okay with leaving people in debilitating pain

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"I've been on ProStap to stop my ovaries working for just over 2yrs now and will be having a hysterectomy soon. Other than ProStap, nothing I tried has made a scrap of difference "

Hope the surgery goes well and provides some relief. Keeping everything crossed for you ❤️

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By *ittle Miss Tinkerbell OP   Woman
5 days ago

your head


"My ex wife had this, we ended up paying a private consultant who agreed she needed a hysterectomy. The NHS had continuously avoided this, shuffling her back and fore between gyno and bowel specialists as her symptoms were IBS like though in sync with her cycle. The hysterectomy solved it for her though I understand this isn't always the case.

I hope this is ok to post mods (given the use of medicinal cannabis now) but when it was bad, about the only thing that really helped her was cannabis. I know you can now get this prescribed for mental health conditions, no idea about endometriosis. As above, hers used to trigger IBS type symptoms though she has since said she believes some of what she suffered may have been psychosomatic - her stomach would swell and bloat within less than a minute of eating food, long before it could have got near sections of her bowel that were affected and she believes this was why the cannabis helped - I can't comment and neither of us are medically trained. I hated the smell of the stuff but it certainly helped her.

It appears to be a disease that affects different people in very different ways which makes sharing coping strategies difficult. It certainly was hell for the 5 years or so it took her to get diagnosed and operated on. She also found she was unable to take HRT as this caused the symptoms to return so menopause was sudden and quite sharp though the symptoms luckily only lasted a year or so.

P"

Thank you for sharing ❤️

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By *inger9007Woman
5 days ago

Hastings

Hi I was diagnosed had to fight 10 years for my hysterectomy. Finally had it 18 months ago. Keep fighting trust me. I'm now having my ovaries our due to further issues but find a great gynecology unit and you'll be fine 🙂

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By *inky_couple2020Couple
5 days ago

North West


"I've been on ProStap to stop my ovaries working for just over 2yrs now and will be having a hysterectomy soon. Other than ProStap, nothing I tried has made a scrap of difference

Hope the surgery goes well and provides some relief. Keeping everything crossed for you ❤️"

They want to leave my ovaries behind, which I'm not keen on because I reckon it'll just come back PDQ. It's all driven by oestrogen. I only feel vaguely healthy with my oestrogen totally suppressed.

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By *obilebottomMan
5 days ago

All over


"My friend had it, she had a full hysterectomy at 30. My cousin has it and has begged for surgery, now is told there is a checklist and they won't consider you unless you have done everything they tell you including the pill, the coil etc

It baffles me why they are okay with leaving people in debilitating pain "

A very common occurence yhese days to leave people in suffering for very long time for a variety of reasons including lack of appointments, specialists, cost of treatment and so on. Very sad

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By *urry BlokeMan
5 days ago

Stalybridge

My ex Mrs did

Having been together throughout the biggest part of our 'child bearing years', I guess it's what, ultimately, denied us both from being parents

Having witnessed how debilitating it can be both mentally and physically. I am glad it is now being brought more into the spotlight and given the credence and visibility it deserves

Sorry I can't offer any treatment tips OP - I simply hope that, in time, the symptoms and the stresses it brings ease for you

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By *inkShyWoman
5 days ago

near Windsor


"My friend had it, she had a full hysterectomy at 30. My cousin has it and has begged for surgery, now is told there is a checklist and they won't consider you unless you have done everything they tell you including the pill, the coil etc

It baffles me why they are okay with leaving people in debilitating pain "

It's disgusting. I was ignored from age 16, I kept on and on, and was treated like a hypochondriac, diagnosed with IBS and celiac to shut me up. Then when I was trying for a baby, it wasn't happening, I was sent away for 2 years to keep trying. Then I was asked why I hadn't seen anyone about my endo or PCOS, which caused me infertility, and as I was then 35 I wasn't a "valid candidate" for fertility help due to my age.. even though they had essentially caused it.

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By *ubmissivebexWoman
5 days ago

Yeovil

I had surgery and have had a mirena coil since which seems to be keeping on top of it but I know that's not for everyone.

I used to have strong painkillers, heat packs and peppermint tea none of which did a great deal unfortunately. It wasn't until having surgery that I got proper relief.

Hope you find some relief

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By *uri00620Woman
5 days ago

Croydon


"2 surgeries, the pill, naproxen. Then lots of hot water bottles.

That sounds awful, I'm sorry. I tried naproxen, doesn't work on me unfortunately. Do have other painkillers that help, just feel like I'm starting to rattle when I walk with the amount of painkillers I have to take sometimes. "

It takes such a long time for a diagnosis. I got mine at 21. From the age of 11 I was having a week off school every month so hugely impacted my education. I was brought up by just my dad so I think he just didn't really understand it and as a child I was uncomfortable talking about it in front of him with a doctor. That didn't help much either. You'd imagine though a doctor might have investigated more, after many school absences, vomiting, passing out regularly etc?...

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By *ympho6969Woman
5 days ago

glasgow

Someone I work with went private to get surgery. Instead of waiting years ok the NHS, she was seen and operated on in weeks.

Was like a new woman after she recovered

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By *inky_couple2020Couple
5 days ago

North West

I'm absolutely bricking it that our child will finish up in the same way as me. I hope not

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By *ittleMissCali_MrDJCouple
5 days ago

wonderland.


"Not the most lively topic I know but does anyone else on here suffer with this horrific condition on here?

Any advice for pain management, heat pads, tens machines etc?

(For all those that say, "ask somewhere more appropriate", I have done and am asking here as well, it doesn't discriminate just because we are on Fab) "
I've suffered for a very long time.. had the lining removed twice now.

As to pain... I find heat pads, a mix or prescription pain relief and sometimes using a birthing ball to rock on all helps.

They won't give me a hysterectomy despite being told it's the only fix.. I have mine combined with the worst hemorrhagic periods my current gyne has ever seen

Ive now been prescribed zoladex injections to mimic the menopause

Cali

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By *inky_couple2020Couple
5 days ago

North West


"Not the most lively topic I know but does anyone else on here suffer with this horrific condition on here?

Any advice for pain management, heat pads, tens machines etc?

(For all those that say, "ask somewhere more appropriate", I have done and am asking here as well, it doesn't discriminate just because we are on Fab) I've suffered for a very long time.. had the lining removed twice now.

As to pain... I find heat pads, a mix or prescription pain relief and sometimes using a birthing ball to rock on all helps.

They won't give me a hysterectomy despite being told it's the only fix.. I have mine combined with the worst hemorrhagic periods my current gyne has ever seen

Ive now been prescribed zoladex injections to mimic the menopause

Cali"

Yeah the ProStap I've been on is essentially the same thing as Zoladex. How are you finding it?

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By *ittleMissCali_MrDJCouple
5 days ago

wonderland.


"Not the most lively topic I know but does anyone else on here suffer with this horrific condition on here?

Any advice for pain management, heat pads, tens machines etc?

(For all those that say, "ask somewhere more appropriate", I have done and am asking here as well, it doesn't discriminate just because we are on Fab) I've suffered for a very long time.. had the lining removed twice now.

As to pain... I find heat pads, a mix or prescription pain relief and sometimes using a birthing ball to rock on all helps.

They won't give me a hysterectomy despite being told it's the only fix.. I have mine combined with the worst hemorrhagic periods my current gyne has ever seen

Ive now been prescribed zoladex injections to mimic the menopause

Cali

Yeah the ProStap I've been on is essentially the same thing as Zoladex. How are you finding it?"
its great. I get a bit of a hormone flux at the start and end of each round but it stops 90% of my symptoms x

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By *ries AngelWoman
5 days ago

Bournemouth

Yes it’s been a success but with endo you never know if it’s going to pop up somewhere else x

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