Hello 👋

[PenelopeClearwater]

Hi all

I’m new to the fibro group, as I only had a diagnosis last week… I think! The pain clinic consultant told me I have fibromyalgia, but I haven’t had a letter from him yet, so can’t call it an official diagnosis.

Having since read everything I can (journals, research papers, NHS website etc), I’d say I absolutely have the condition and have done for at least 11/12 years, if not longer.

I had undiagnosed endometriosis for 17 years and finally had a hysterectomy in 2019 (aged 33). Since then, I’ve continued to experience severe pelvic pain, which GP’s have been unable to diagnose. Over the last 2 years or so, I have found that my energy levels have dropped and dropped, to the point that some days I just can’t move. And if I manage to struggle through the exhaustion and get up and about, I end up with a migraine…

I’ve been in tears just about every day/night this past week because all I get told is to eat healthily (I do because I have food allergies), try fasting (I’ve done this for a few years now), try exercise (I was always very active, but this condition has taken that away from me). So I feel like I’m being called fat and lazy for having this condition… I’m just scared I’ll never be active and able to go on adventures again. I used to go out all the time, worked really hard, was studying to become a teacher (I had to drop my degree as I got too sick), I’ve travelled the world, and I was finally in the job I love (working with primary school children with special needs). But I feel like that’s all gone now.

Then to add insult to injury, my GP physiotherapist verbally sexually harassed me in a recent appointment and the surgery are clearly not taking it seriously, so I’m trying to fight all their rubbish. Which is all adding to my condition, as I think my original trigger was probably sexual harassment, assault, and abuse throughout my “love” life - plus an abusive relationship/marriage when I was 17 to 22.

Sorry for the rant - it is probably a bit rambling, as I’m just all over the place! 💙

[Yassytina FMA UK Volunteer]

Hello and welcome, you certaintly have had alot to cope with and I am sorry to read of your experience. Part of your post reminds me of my daughter right now, she is studying quite hard to become a teacher, works 3 full days as a TA, 2 little boys ,has endometriosis and Fibro so I witness her daily struggles. It does sound like you will get a letter if they told you at the appointment Very hard on you younger people as it changes the way we live and try to navigate our way round this condition day to day. I am glad you shared your post we really do need to let go how we are feeling So no worries not a rant your introducing yourself and telling us . Frustrating I know having to adapt , I had too give up something I loved and not able to work but I am trying always to keep motivated , I will not lie and say there are days I would love to have a good shout , let off steam, scream even , once you get your official diagnosis people will realise what you are having too cope with daily,hope too see you post again and take care xx

[PenelopeClearwater in reply to Yassytina]

Thank you for your reply, it really means a lot to hear from people who get it. It can all be isolating and sometimes I feel like I’m just making it all up - based on the reactions I get, or the occasional good day where I don’t feel too much pain.

I hope you and your daughter are having many more good days than bad!

And thank you again - messages like yours are like a little virtual hug 😁💙

[denny_the_wench]

This is me to a tee, all the same issues - and almost to the same age also for the hysterectomy. Bless you - but hopefully it helps to know that there are others that have had the same and know what you are going through. One of my greatest wishes at one time was to be able to transfer just for a short while, the pain I was in to the disbelieving medics - and I'm sure there are a LOT of people on this site that would like to do the same with their fibro pains too!

The first thing I would do is find out if it is old adhesion scar tissue that is causing your pain. I was lucky to be referred to a womens health NHS physio who specialised in breaking down scars caused by cesareans and hysterectomy scars in women - although I was originally sent because I was getting sciatica-like pains. At this point I had not been diagnosed with fibro - but having also had to have partial kidney removal and gall bladder removal - both of which in hindsight were probably caused by adhesion damage. The massage & acupuncture I had helped tremendously.

You don't say if you had a full hysterectomy (ie ovaries also removed) or partial (ovaries intact) you also don't mention HRT. I had a full and was offered HRT due to my young age (32), I refused as I'd had enough pills after 9 years of steroid treatment (which didn't work) and said I'd let my body sort out the early menopause - which it did in a little under a year.

Now at the age of 61, I can say that through my 50's I got weird abdominal pains, which I thought may have been residual hormones but I still get them and now believe after further digestive investigations & scans, to be due to adhesions sticking my colon together. However the only way I could prove this 100% would be to pay to have a private laparoscopy which I WAS going to do but Covid got in the way. IF you still have hormones floating round your body then they could still be creating irritations in your adhesions - so that is something else to check on.

I would also join the Endometriosis pages or read up on their site - as I belive there have been studies which are looking at the links between Endo & Fibro (hopefully one of the Mods can comment here? desquinn )

By all means PM me if you want to talk further. But in the meantime - chin-up, you are not alone in this. Big Hugs

🤗🤗🤗🤗

[PenelopeClearwater in reply to denny_the_wench]

Hi - thanks for your reply. Yes, I had a full hysterectomy and was initially put on tibolone HRT, which didn’t help much, but I now use an oestrogen gel and it is fantastic. I’ve been referred to gynae and they have confirmed that it is not scarring, as that’s what I thought initially, too. I had a full laparoscopic hysterectomy, with everything removed and I’ve had several ultrasounds (with another scheduled 😅). Funnily enough, it was because of endo that I joined this site and they have been so helpful on the endo and hysterectomy side of things.

My GP recently suggested I may have CFS, which they sometimes confuse for fibro and my symptoms don’t correspond with that, but do with fibro - and have done for going on 10 years! I just never thought to look at it. I suppose I always make the mistake of not taking my own pain seriously until it’s got to the point where I can’t function anymore, then I think I should probably look at it! That definitely comes from a lifetime of doctors telling me to just shut up and put up…

Aside from the physical aspects of whatever I’m going through, I just feel almost in mourning because the old me seems to have disappeared in such a short space of time. I never expected to still feel 21 for the rest of my life, but a gradual decline would have been nicer 😅

Thank you again - it really is just so nice to know I’m not alone and be able to hear from other people that they experience the same things and the same reactions from doctors and generally people who don’t have a chronic pain condition/invisible illness 💙

[desquinn Partner Volunteer FMAUK Trustee in reply to denny_the_wench]

not sure about the research validity or better to say stage of development but there are a number of people that suspect that a line may be able to be drawn among conditions like fibro, IBS, endo, and vulvodynia in that the pain elements may be linked back to CSS and they are perhaps different reflections of the same underlying mechanism even if they have different pathology ultimately.