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The UKFibromyalgia Forums • View topic - Endometriosis & Possible Fibro



Endometriosis & Possible Fibro

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Endometriosis & Possible Fibro

Postby jean-a » Mon Feb 06, 2012 11:29 am

I am new here - but not yet diagnosed - but I feel my fibro type problems all go back to endometriosis, diagnosed when i was 34 after several years of severe period pain. Age 34 removal of large ovarian cysts, age 40 hysterectomy, age 42 removal of ovaries - or so I thought. But I continued to have severe and disabling pelvic pain (and nearly thirty years on still do) and I later found out that I was in such a mess inside that they weren't able to remove the remaining half of my right ovary - part was removed in my first operation - but I wasn't told this. I discovered it by contacting a researcher who was researching those women who continued to have severe pelvic pain after removal of ovaries, sent him a blood sample and he phoned to say he'd got a very surprising result which showed I had normal ovarian function! I asked to go back to the gynae, who confirmed this - and that there was nothing they could do but the pain may get better over time - it didn't!

Along with 'endo' I had severe fatigue, it was like my energy being switched off and could happen at any time; I frequently consulted my GP but it was always dismissed as 'everyone gets tired from time to time', and its never gone away. I would go through spells where I had an energy switch off at some time on most days, then not so frequently. Also at times with the energy switch off I would feel very cold and shivery.

The severe fatigue problems got worse probably around four years ago and it would be difficult to get through a day without a rest. The feeling very cold problems got worse about three winters ago but improved a bit during the next summer only to return. Most days for the past three or four months I've had an episode of feeling very cold. The 'pain everywhere' problems go back about ten years and on occasions it would feel as if I had flu, sometimes it would last just a day or so, other times for several weeks and then go away for a bit. The pain everywhere problems increased dramatically about two years ago and I went to my GP with them November 2010 and had blood tests done, which showed nothing wrong and was told there was nothing wrong, just I was probably a bit depressed and that makes people think they have pain.

I have seen my GP several times over the past five months or so with this severe fatigue, pain everywhere and feeling cold and nothing was done until last week when my husband came along too. So more blood tests were ordered plus Xray to see if its arthritis. It was while waiting for the Xray I picked up a rheumatism and arthritis leaflet - and there was 'fibromyalgia' and everything I have. I have printed out a leaflet and underlined the problems I have and sent this with a letter to my GP asking if this could be what I have. In addition, at the weekend a neighbour came in to see me and asked how my arthritis was - and I said I was extremely tired and hurting all over - and she immediately said 'you have fibromyalgia' - although she doesn't work now, she was a clinical psychologist.

On one site I have looked at, it mentions that chronic pelvic pain can cause central nervous system disorders which is what fibro is. I have to ring for my test results on Wednesday but my GP had said that in the unlikely event of anything being wrong, he would phone me, I hope he will read my letter and contact me when he has the test results - I know there's no treatment but to know what it is would help me cope with all these problems
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Re: Endometriosis & Possible Fibro

Postby FluppyPuffy » Mon Feb 06, 2012 12:05 pm

:welcome: to the forum jean-a :bear-dancing: :bear-dancing: :bear-dancing:

I'm sorry to hear what you've been going thru with trying to find out what is the reason for all your symptoms and pain. Sadly it's a very familiar story for those of us with chronic pain problems and getting a name to call those symptoms can take a very long time :-x :-x :-x

I've split your post off from where you originally made it, and moved it into here with it being your first one. It could have got lost in with all the other threads where is was, whereas putting it here will hopefully mean you get plenty of replies that you may find helpful. I've also made your paragraphs a bit clearer as quite a lot of us FMers find reading large blocks of text difficult.

You'll appreciate that we can't say that what you have is FM, what we can do tho is tell which of your symptoms sound like something we may have experienced, so hopefully when you go back to see your GP about your tests results, what you've read on here will help with getting to the root of your problems.

When you do get your test results, if your GP is still unsure or confused, you could ask for a referral to a Rheumatologist as they are the specialists that often deal with conditions such as FM. Your GP may feel able to finally give you the answer you've been looking for tho :fingerscrossed: :fingerscrossed: :fingerscrossed:

In the mean time, if you have a look thru things on here, you'll find lots of info and advice that you may find useful. Plus we do quite a good line in trying to help and support each other with thr rubbish that comes along with things like FM. And if all else fails, we can resort to [chocolate] [chocolate] :wine: :wine: and :crazy: :crazy: :crazy: :crazy: :crazy:

Anything you want to know about, just ask away and we'll see how we can help you with it :goodluck2: with your next appt, hopefully you'll start to get some answers soon :fingerscrossed: :fingerscrossed: :fingerscrossed:


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Re: Endometriosis & Possible Fibro

Postby shazq » Mon Feb 06, 2012 1:49 pm

:welcome: to the forum Jean :wave:

Hope you get some answers soon. :goodluck1:
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Re: Endometriosis & Possible Fibro

Postby denys » Mon Feb 06, 2012 8:00 pm

:lol: And :welcome: from me too, :goodluck1: on getting some answers soon :wave:
Last edited by denys on Mon Feb 06, 2012 8:02 pm, edited 1 time in total.
Reason: cos I'm stoopid lol
Denys

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Re: Endometriosis & Possible Fibro

Postby shelleydwales » Mon Feb 06, 2012 9:32 pm

Hi jean:-D ,
Welcome to the forum xx

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Shell xxxx

Tomorrow is another day....be brave and smile :-)
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Re: Endometriosis & Possible Fibro

Postby fibrolouise » Wed Feb 08, 2012 5:20 pm

I was interested in a connection between endometriosis and fibro. I had severe endometreosis and a large cyst which resulted in a hysterectomy in 2004 aged 34.

I have had many years of fatigue along with migraine, ibs muscle aches like flu and foggy head!! Following so many visits to the Dr i was finally referred to Rhumotology, diagnosed with FM, given a leaflet to read and discharged back to the care of my GP.

I feel so lost and am now researching FM to try and find the best way forward. My GP left my practice and i have to find a new dr to understand my health problems.

I am not working due to the pain , can hardly walk at times, its nice to find support from the forum. :-D
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Re: Endometriosis & Possible Fibro

Postby FluppyPuffy » Wed Feb 08, 2012 8:32 pm

:welcome: to the forum fibrolouise :bear-dancing: :bear-dancing:

Have you been recently dx'd with FM?? Sadly your experience of seeing a rheumy, being given a leaflet and being discharged back to your GP is one that a lot of us have gone thru, so we understand how lost it has made you feel.

Hopefully tho, now you've found us, you'll start to feel a little less lost. There is a lot of info and advice on here that you may find helpful with your research and finding the right way for you to go move onwards. We also try to support each other with the rubbish that comes along with FM. And if that doesn't help, you can always cuddle :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: :teddy-bear: and eat plenty of our [chocolate] [chocolate] [chocolate] [chocolate]

Anything you want to know about, if you just ask we'll see if we can help you with it :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Endometriosis & Possible Fibro

Postby shazq » Thu Feb 09, 2012 4:55 pm

:welcome: fibrolouise :wave:
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Re: Endometriosis & Possible Fibro

Postby jean-a » Fri Feb 10, 2012 11:01 am

I've now had my test results; they were all normal apart from a bit of arthritis in my shoulder.
I wanted to talk more about whether this was fibromyalgia with my GP but the next appointed was on 21 February and I need to make some decisions next week. I worked with school groups at our allotments and we need to set up projects for next term, I have been finding this very hard to manage over the past few months - I've loved doing this, helping the primary age children learn how to grow things and introducing them to 'nature' but its going to have to be no as its now too exhausting

I therefore saw a different GP - who tested me for the trigger pain points and they were all very painful, she also tested other points which were also very painful - and her conclusion is that because I have all these additional painful points its not fibro. Her view is that its an extreme central nervous system sensitivity disorder and has developed because of my long standing chronic pelvic pain

I have been to the pain clinic on lots of occasions for my pelvic pain and also attending pain management courses, the last discharge letter said they could do no more for me.

Fibrolouise: at times I also had difficulty walking because of the endo - for me the pains just used to shoot through my abdomen in all directions and down my legs. I had to give up work at times and at best only managed to work mornings - spending the afternoons in bed resting because of the pain and fatigue.

I still think there is some element of 'fibro' in what I am experiencing
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Re: Endometriosis & Possible Fibro

Postby FluppyPuffy » Fri Feb 10, 2012 12:50 pm

It is possible to have fibro along with another or several other conditions/problems, so what this different GP said may not be exactly right :-? :-? It might be worth seeing your regular GP to discuss the various possibilities and what could happen next in finding the answer to your problems. You could ask for a referral to a rheumatologist as they tend to be the specialists who deal with conditions like FM. If you have the letter the pain clinic sent you about not being able to do any more to help you, it might be worth taking that with you as well. I know that GPs are supposed to get copies, but things can go AWOL, and if the pain clinic was mentioned again, you'd be able to show your GP what they have said as to why it wouldn't make much sense to refer you back to them.

Have you said anything to anyone else involved with your school group work about what has been affecting you at all?? If not, it might be worth doing so they have an idea of what you are still able to cope with and do. Is there someone at the allotments who could assist you in your work, with you doing the things you can still manage and them doing the practical work you can't manage based on the distructions you give them?? :-? :-?


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Re: Endometriosis & Possible Fibro

Postby jean-a » Mon Feb 20, 2012 9:19 pm

I've now seen my own GP and he says that it is fibro; he also thinks that its developed from my chronic pelvic pain problems which followed on from endometriosis. So now I need to find out all I can about fibro and how to manage this contant and overwhelming tiredness, pain and feeling so cold
He has suggested I try Pregabelin to see if this helps. I had been prescribed Gabapentin about four years ago by the pain clinic for my pelvic pain but couldn't take these as they made me feel terrible.
Re my 'schools' projects, no one else from our allotments wants to take this on and so far the school hasn't been able to get any interest from parents, I'll stay in touch with them and advise them of what to do on their plot, which they will continue with
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Re: Endometriosis & Possible Fibro

Postby shazq » Tue Feb 21, 2012 2:29 pm

:fingerscrossed: the pregablin help Jean. :hugs:
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Re: Endometriosis & Possible Fibro

Postby shrimp » Mon Feb 27, 2012 12:00 am

hi jean and louise (sorry already forgotton the whole name !!) i havent been on here for a long time as just dont get enough good times without fatigue to come and have a look.....i too have endo - diagnosed when i was about 20 (now 40) had many drug therapies, 9 operations and my next one will be on my bowel - however due to fibro they will do not the op (in case stoma needed) as i am not physically, mentally, emotinally strong enough to go thru that......i had ivf treatment and had non identical twin boys via c section in feb 2007 and two weeks later the fibro stuff kicked in - took until 3 years ago to get diagnosed but they have been told it is highly likely that the huge stress of years of constant endo pain/treatment/medication, and the stress of bad childhood (main part mother died when i was 8) that after the c section my body just could not cope with any more and went into fibro mode......i still cannot get my head round this - unable to work anymore, cannot be the mum to my boys that i want to be, now on butrans patches plus tramadol, citolpram and have better days where i go all out to do as much as possible and then few days later whallop i hit the deck big time......and i do think endo has big part of it as have read in several books if you have endo then more than 10 times more like to get fibro/me/cfs than women without endo.....my pain for that not too bad but those bad boy cramps do kick in - for me the endo pain was far worse than the fibro pain has been - BUT the endo pain was from knee upto under breast pain anywhere anytime any shape and form, whereas the fibro is everywhere - top to toe and its the different types of pain that are hard to deal with.....i knew where i was with endo with fibro it keeps me guessing.
anyway, waffled too much but yes another endo/fibro person out here....
you might be able to give me advice as we have an allotment - not that i can actually do anything there but very new to it all and not sure what gets planted when etc...
take care
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Re: Endometriosis & Possible Fibro

Postby jean-a » Sat Mar 03, 2012 3:01 pm

Hi Shrimp: I also found the endo pain far worse than the fibro pain, and I still have pelvic pain which is frequently severe, this is put down to 'adhesions' - I use a TENS machine for this. I also found the operations/drug treatments very stressful and then after them being no better.
Re your allotment, I'd recommend that you grow the vegetables you like to eat, runner beans are good and its best if you sow one lot, then about two weeks later another lot, and then another lot, to extend the season; I also grew courgettes but watch they don't get too big and become marrows! Early potatoes are nice and also peas. I also grew flowers on my plot. If you can, go to your allotment and even if you yourself can't do anything, just sit and watch, there's usually lots of birds around and allotment can be very friendly places. I've had to give up my plot as I can't manage it but I'll still be connected to the site as I look after the 'community and wildlife area' and can still do this as its not 'time critical' meaning if I'm having a bad day, I don't go - and I probably wont go short of vegetables as whenever people have a surplus they pass this on to others. If you want to look at our allotment website its at www.onesuffolk.co.uk/castlehillallotments
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