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Fibromyalgia Action UK
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Feeling hopeless

Hi guys, I usually don't post on here just read some stuff but I'm feeling the need to let of steam.

Been feeling so very depressed just lately and very lost.

I'll start of a little a bit about me, I'm 44 years old and at the age of 41 I had to have a full hysterectomy due to endometriosis , it was all over my bladder, bowel and pelvic area, everytime it got cut out it kept growing back again so I was badly informed that I needed to have a full hysterectomy to get rid of it, I have no children so it was a very hard decision but I just wanted to get rid of the pain so I had it done, straight away I went into radical menopause and two months after the operation I was back in the operating room where would you believe it more endometriosis was found!! I've now been told there's nothing that can be done for my excruciating pain as there's old lesions of endometriosis wrapped up in my old scar tissue from my hysterectomy and it's to dangerous to cut out , so not only have I still got my endometriosis but now suffering from all the awful side effects from the radical menopause, I can't take any HRT or any natural stuff for the menopause due to it making my endometriosis any more worse ๐Ÿ˜–

Then last year was diagnosed with fibromyalgia and chronic fatigue syndrome. I have no control over my bladder ( due to the endometriosis, seven pelvic operations and losing all my oestrogen) so have numerous occasions of wetting myself. I also have a non functioning mega colon basically I don't poop unless I take very strong laxatives and have been told at some point with have to have a colostomy bag.

From being someone who enjoyed and loved life so much to now being housebound, no friends, stuck on a whole long list of medication some being very strong opiates I'm beginning to wonder what is the point in being here.

I've got nothing to live for

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Hi teri2102 I am so sorry for everything that you have been and going through๐Ÿ˜ฅ i understand some of your pain i too have suffered endometriosis for last 16yrs had numerous laparoscopies to reduce and many months and years of pain, i know its not on the same level as yourself and i was told to have a hysterectomy which i chickened out of due to being afraid of going through menopause at 26 (i am now 40) so i applaude you in taking that massive decision!! Im sure in time once your body gets use to the drastic impact/shock it has had to cope with things will feel bit better in time, i was also diagnosed with fibro few mths ago after years of suffering pain/fatigue brain fog with depression/anxiety thrown in after my eldest son tried to take his own life and then my husband had to have a leg bypass and then to top it all off in the last 2wks ive been diagnosed with breast cancer, it sounds to me like your suffering with possible depression i urge you to go to your GP asap and please tell them exactly what you have written on here you seem like you need extra support and help to get you through this horrible phase in your life but believe me no matter what life throws at us YOUR LIFE is worth LIVING you just need abit of direction to help you get through, even if you speak to samaritans just please actually speak to someone!!!, i hope you do keep posting on here lots of lovely people you can chat to who understand some of your worries/pain/woes thinking of you lots of gentle hugs๐Ÿ’•

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Oh bless you to๐Ÿ˜ช you to have been through it and still here

Thankyou for you're kind words and hugs.

I actually did ring my doctor's and told him I don't feel like being here , I'd been having bad thoughts and guess what he stuck me on another tablet and that was that.

I'll be ok, it's just all got on top of me.

Sending hugs back xxx

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Is there a heathy minds in your area or similar mental health group you can usually do a self referral thats what i did and i currently have CBT sessions im not saying it works for everyone but i found talking to a complete stranger has helped me of course its not gojng to solve you medical issues but if you can somehow manage to process what you have been through and your future you could be better equipped in your mind, but please look into it, it might benefit you talking to someone cannot believe your GP throwing more meds at you especially after telling them how low you feel that is not a dutt of care ๐Ÿ’•

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Hi there thank for replying, I am actually waiting to be sent on a intense pain management course that consists of physiotherapy and CBT , my pain consultant is arranging it.

It's only for a month, two whole days a week and there's a three month waiting list . Although I'm even worrying about that now incase some days I can't go due to a flare up of my chronic fatigue syndrome, when that happens I can't even lift my head up due to my fatigue let alone do two 8 hour days!!

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Yes understand on waiting list not great i just completed pain management x1 per week for 4hrs personally i didnt get much from it though i did meet some lovely people they can be understanding if you cant make it i couldnt attend 1 time due to hibbys op but they put me on the next lot of yhe course and i attended the meeting i missed first time round once you get your appointment ring them up and explain might be a possibility you cannot attend this could be a good thing for you mixing with others going through similar issues just a pity you have to wait in meantime keep chatting on here etc your never alone๐Ÿ’•

And thankyou long battle but determined to win ๐Ÿ˜˜

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Oh thankyou for you're advice ๐Ÿ˜˜

Stay strong๐Ÿ’ช

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You too hun i always say you have to go through the s**t to come smelling of roses keep strong you got this๐Ÿ‘๐Ÿ’•

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I meant to say I'm so sorry to hear about you're breast cancer

I hope and pray you get all the help soon xxx

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Oh Teri what can l say!

I just came on the site to post a similar thing. As l have not stopped crying today!

Been feeling pretty crappy for ages now. Like you l had a total hysterectomy due to Endo but l have been on HRT for 15 years now. I asked if it could return but have always been told no.

After years of UTIs and urine retention (having to be catheterized) l got that under control. Then the fibro with all it brings with it.

Recently just paid for a CT scan on my bowels. Now have to go on a liquid diet to give it complete rest.....that along with really painful costochondritis. Arrghhhhh.

So Teri. you say you are housebound with no friends.

Have you no family?

And how has your doctor been? I cannot believe there's nothing more they can do for you.

I do understand your frustration. I feel like my future has been stolen. And find it so hard to accept the situation.

I do have a great partner and my dog so something to live for. But l know how difficult it is to be positive...

However. You must be a strong woman to have gone through what you have so far. So try and dig deep for some more of that strength.

I wish you well....

Hazel.

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Ahhhh thankyou Hazel , how lovely you all are on here.

My doctor just wanted to stick me on more tablets when I told him I was having suicidal thoughts.

I'll be ok, I'm usually strong but obviously just having a bad couple of weeks

Just having all you're kind and helpful support today has really helped, thankyou and I hope you too get some relief very soon ๐Ÿ˜˜

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Thank you Teri.

Yeah I'm sure you will be ok. Same here, it's just one of those days, weeks, months....๐Ÿ˜’....๐Ÿ˜Š

There are some lovely people in this site. Always helpful. And let us know we are not alone in this struggle.

Take care. X

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Hi Teri, how sad to read your post, you are still so young ,im a senior citizen ๐Ÿ˜ƒ , and you have been through so much, no wonder you are feeling down, but as said we have to go through the bad times to know the good, this too will pass and the sun will come out again, you've got plenty of friends on here to chat too at any time, take care of yourself, sending best wishes

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Ahhhh thankyou , you're all so very very kind.

Best wishes to you too xxx๐Ÿ˜˜๐Ÿ˜˜

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Yes this site is very friendly, it's good to chat so don't be a stranger, just join in when you feel like it ๐Ÿ‘๐Ÿ˜ƒ

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Oh Teri I hear your desperation, pain is a big downer. BUT you've got everything to live for. No matter what you are a precious being and you will be happy again. Take one moment at a time, without looking back or too forward. It's really the only life we have here and now. The rest is just a memory or daydreaming.

I think the pain course will be good, its more holistic than some other treatments (pills) so well worth it. I would also suggest some type of meditation. It has helped me a lot. You could also try relaxation methods, visualisations and active self compassion.

I had endo and other things so for pain and depression these are the things that helped and continue to help me.

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Oh thankyou๐Ÿ˜˜

I've tried nearly everything else so hopefully this will be the one to help.

Thankyou again for you're encouragement.

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Im so sorry to read how low youre feeling. Although I dont have a quick fix for you hun, I do hope you will find answers and support throughout this group.

I am only too familiar with that feeling of doctors prescribing one pill after another, which isn't always the best answer.

Are you able to exercise? The reason I ask is because I believe strongly that exercise is great mood enhancer. Even in a moderate way. It's also a way of getting out of the house and socialising again.

Best Wishes and I do hope things start to look up for you. Suzzie ๐Ÿ˜Š

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I am so sorry to hear what you have gone through and still doing so. It amazes me how many on here are battling with so much. My life changed after my hysterectomy with depression and panic attacks which i never suffered with before. Then Fibromyalgia hit me 4 years ago and now Hyperparathyroidism. You have been dealing with so much more and I feel for you. A good chat on here always helps but finding a local group will also help. Sending you big hugs and take care xxxxc

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Oh I'm sorry to hear you to are suffering, it's so sad what our own minds and bodies do to us .

Thankyou for you're big hugs and I'm sending them back xx

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Thank you and remember we are always here for you xxxx

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Hi suzzie thankyou for you're kind words

Yes I do try and exercise but only at home, I also try and pace by doing something like housework, etc etc then resting then doing something again , it sometimes work but where I'm not sleeping due to my pain and hot night sweats it's hard sometimes but I try my best.

I'm usually such a very strong minded person that tries to get on with it but just lately it seems it's just got on top of me I can't even cry, I think if I can have a good cry it might make me feel better , I just feel numb.

I had a wonderful social life but when the endometriosis struck in my 30's everything went down hill from there.

Thanks again for replying , take care xx

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Hi Terri,

I so sorry to read of your health difficulties. I have stage 3 endo and had two major op for it the last one about 4 yrs ago at an accredicted centre. The excised my endo, but now it is growing on the nerves in my pelvis. This cannot be removed due to the risk of making my severe pain worse unless I grow another endometromia they are leaving me alone surgically . My bowel is stuck to my womb which causes me great pain and am now on medication for my bladder as it's also being affected. I'm under my endo centre so I'm going to to ask to get ref back due to the these problems.

Unforuntely a hysterectomy does not cure endo as you have discovered as the lesions have escaped and in the pelvis and surrounding areas, so even if the womb and ovaries are removed the disease still remains. Are you under an accredited centre for endo? If not I would ask your GP to refer you to one. HRT can feed endo as it has oestrogen in it. Obviously I am not a doctor and someone at a specialist endo centre would be the person to speak to. I undsertand your pain. If you go to Endometrosis Uk here on healthunlocked they will be able to give you so more info and support for your Endometrsosis side of things. I hope this helps xxx

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Hi there I'm so sorry to hear you to have endometriosis.

It's a bit of a long story of my case but my full hysterectomy was performed by a gynecologist consultant that didn't remove any new endometriosis when he performed the operation, and like you stated none of my endometriosis affected the organ's he removed as it had travelled everywhere even on my gallbladder which in the end had to be taken out, so me having the full hysterectomy was pointless as I've gone onto to having two more operations where new endometriosis lesions were found.

My last two operations was performed by a specialist endometriosis clinic in a different hospital and it was them that informed me that like you they can't remove the old endometriosis due to it being wrapped up in some nerves.

I'm so sorry to hear you're suffering so much as well and I hope you get some help and relief very soon. Xxxx

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Hi Teri

I'm so sorry to hear your endo is growing on the nerves like me, it's such a painful thing to have. I hope that get some relief very soon too xx

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healthunlocked.com/fibromya... Hello there firstly I am so sorry to read this, currently my 32 year old daughter is poorly again due to endo as usual surgery have not chased up her hospital appointment and she was sent home again from work poorly. She has 2 little boys. I watch her struggling and reading your story with cfs /fibro there cannot be much more life can through at you. May I ask do you have family with you for support, I have read you are waiting for cbt, I did have that last year it did help me , I think once I had attended the 1st couple of appointments I found myself pouring out how I felt (Iโ€™m 57 cfs/fibrosleep apnea are the main things) they changed my meds which is working but like you I sunk to a place where I didnโ€™t see any light at the end of the tunnel. I know what you mean giving you more meds but if they find one that takes the depression away thatโ€™s a start. Keep chatting we all do need a shoulder Iโ€™ve found some lovely members here and it really does help me to know Iโ€™m not alone. I posted a link above if you would like to lock your posts it does generate more privacy as only our community can see. Sending gentle hugs xx

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Oh I so sorry to hear about you're daughter and you to.

Thankyou for my hugs, I'm sending you and you're daughter some back too

Oh right thanks I wasn't aware I had to lock my post, it's the first time I've ever done anything like this, I'll do it now , xxx

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No worries itโ€™s just something we just advice for your privacy, that means a lot Thankyou for your kind thoughts , I thought of you this morning after I read your post, it stayed with me, ur one brave lady and I can see the lovely replies already, I tried to think about last year when I wasnโ€™t really able to go out much and I thought of the things that made me happy in my home. Watching my favourite tv programmes films listening to music, also tried relaxation music like the dolphins waterfalls etc, made sure that someone got me my favourite food and chocolate so I could nibble (comfort food ) always loved my choccie , my auntie owned a sweet shop when I was alittle girl thatโ€™s where it started. Little things but still now they give me comfort. Have you alittle garden where you are?? Xx

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Hold on in there ... give it time .I can't even imagine trying to recover from hysterectomy ๐Ÿ˜ฉ. I really feel for you ...I'm same I believe the endo brought on fibro...cos of the ridiculous shocking pain .I'm 50 and was offered hysterectomy but I know I would struggle and they can't guarantee it will reduce endo pain..so I'm taking mini pill ..which apart from injections I find best option ...I think it could take some time ..be patient ...get a massage .. float in hot bath ..get your pain relief right for you . ( I take anti inflammatory ) strong one.xxxx

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Hi there, yes I too think the endo brought on the fibromyalgia and chronic fatigue syndrome.

I so hope you get some relief soon from it to, thankyou for you're encouragement xxxx

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Teri first think first thing first. A warm loving ๐Ÿฅฐ hugs ๐Ÿค—. I fully understand where you are coming from. I was diagnosed with endometriosis when I was a teenager. Then when I was 34 was diagnosed with fibromyalgia and CFS back in 94. I was a nurse and licensed minister with the Assembly of God church but due to the fatigue, fibro fog and pain I just couldnโ€™t go on any longer. I had to go on disability. I struggle now with what my purpose in life is. So I understand. When I was a teenager the doctor put both my twin sister and I on low doses of birth control pill which knocked down the heavy periods to light ones and the pain down from a 8-9 down to a 2-3 on the pain scale. He told me the cure for endometriosis was to have kids. Which when I had my kids the heavy flow and severe cramping did let up and I went into early menopause in my early 40โ€™s. So now that pain is behind me. I would think there would be some kind of low dose birth control your doctor could prescribe that would make the pain less severe. My counselor has me doing mindfulness meditations to help deal with the pain and negativity thinking. I am now 57 soon to be 58...๐Ÿค”boy I am getting old. Anyway my faith in God helps me to know this is only temporary here on earth but the spirit lives on and there will be now more pain no more sorrow, tears nor suffering but instead will be joy, peace, happiness and love in His presence. ๐Ÿ˜Š๐Ÿ’•๐Ÿฆ‹

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Thankyou for you're reply.

Becauseause I've had a full hysterectomy I couldn't go on birth control, I haven't got my ovaries anymore . Before I took the big decision of having a full hysterectomy I tried everything, birth control, injections etc etc but my endo was so aggressive where it kept travelling every where in my body ( I had to have it cut of my liver, bladder, bowel, all over my pelvic area and my gallbladder had to be removed)

Having the full hysterectomy was the last resort, but to no avail as I've still got new endo growing back .

I'm so sorry to hear about you're story and it's lovely that you've found faith in God.

Sending you hugs and thankyou again

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You are welcome Teri, I accidentally hit the cancel button after I had written a partial reply. I was thinking ๐Ÿค” that the ovaries controlled the monthly cycle but Iโ€™m thinking the pituitary gland plays a role in there effecting the endometriosis? The fibro fog isnโ€™t letting me remember everything from when I was a nurse so many years ago. I know you are in menopause from the total hysterectomy but something is fueling the endometriosis? I hope the doctors are able to figure it out sooner rather than later. You are in my prayers. ๐Ÿ˜Š๐Ÿ™๐Ÿ’•๐Ÿฆ‹๐ŸŒป๐ŸŒท๐Ÿ’œ

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Hi, Teri.

You remind me of many people on this site. In pain or on medications and the doctors only prescribe more medications when they add new conditions they have diagnosed you with. Surgeries that cause more pain than cure. It's hard to deal with all of the problems and the emotional roller coaster that goes along with these.

Please know that I am praying for you. Praying for what I ask for almost daily: a chance to have my pain reduced. A chance to have a genuine response from someone saying that I should keep fighting. Telling me that I can cope and stay strong.

I hope you get that from the answers here. We are all reaching out through HealthUnlocked for help from people who understand. From those who have fought longer than us and those who have alternative ideas on what might help. And for a kind ear that will "listen" (actually reading is what we do) to you and care enough to write an answer.

I know this site has helped me a lot. I hope it can help you too.

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Oh how beautiful, thankyou for you're kind, thoughtful words and prayers.

How lovely you all are on here.

I to wish that you have some relief soon

๐Ÿ˜˜๐Ÿ™

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My dear, I am so shocked by all that you have disclosed, and am feeling very sorry for you indeed, and may I pray for you? Regarding the Menopause, I had mine very early so was finished by age 45. I took a herbal preparation, no drugs, and when I can remember the name, I will pass it onto you. I have ME, Fibro and IBS and have been disabled for many years, but despite all that you are suffering, you are here for a purpose and I know I am. All I can say is that I have joy in the Lord, and every day, despite pain, and many disabilities, I truly value each day God has given me, now elderly. I am praying for you now. Love from Roselil

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Dear Teri, I took Vogel's Agnus Castus during my Menopause, though it is suitable for PMS and I am sure it helped me through, but please check on it first. This is obtainable in any Health shop. I still got a lot of sweats for years afterwards but nevertheless I always preferred taking natural herbal remedies rather than drugs. Be assured of my prayers. Love Roselil.

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Hi please donโ€™t say that you have thing to live for, of course you do and you will find lots of friends on here which maybe web friends but itโ€™s such a big help being able to open up on this forum.

If you ever need a chat feel free to PM me. Like you I suffer with bowel & gynaecology issues too, itโ€™s not easy and you go through some very dark days xx

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You have a heart and soul and mind. We are spiritual beings in physical bodies not physical beings in spiritual bodies...Everything that happens is pre-ordained and is not punishment. Please carry on--You have a mission in this life--you already showed that by posting here--and look at the reponses!!!! I send my well wishes and blessings. I know it isnt easy--and I dont downplay what you have been thru---I have my own story too and my life has turned upside down.its anew view- sometimes life is more beautiful this way!! MmeT

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Hi

Having just read your post, I really feel for you

I too have much pain cos I have fibromyalgia, under active thyroid, IBS, Diverticulitis, costochondritis, sciatica, Nash,(non alcoholic steatohepititis) caused by meds from my Dr, depression to name but a few!! Everyone on here is great

I'm lucky cos I do have a good support network. You are in my thoughts and prayers. Love and hugs Lynne xxxx

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Thankyou for you're prayers and hugs and I'm sorry with all what you're going through.

I do hope you can get some relief yourself very soon

Sending you hugs back too๐Ÿ˜˜

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Thank you. Love and hugs Lynne xxxx

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i can relate to nearly all you are going thro. 30 years since i had complete hysterectomy for endometriosis. Hoped it would be end of years of problems. No way, just the beginning of more problems. Since then fibro. kicked in big time. Had several difficult traumas to deal with over the years and they have definitely had an impact. Practically nothing works properly anymore and i am always full of pain. The worse being head, neck, shoulder and back. Doc no help really as it is always put down to fibrom and i can't tolerate meds i have tried. Plus don't forget lack of sleep. All that said, try to take heart from knowing that all the others on this site are also suffering, so you are not alone, and as we can relate to your daily struggle, we are all wiling to listen anytime. Take care.

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Oh bless you ๐Ÿ˜ฅ I'm so sorry to for what you are going through to

When I was first diagnosed with endometriosis when I was in my 30's I so wish I had researched it properly as the gynecologist consultant I had then who was in his 60s had such a different outlook than what they have now, he use to say to me well you look really well and he was so stuck in the 80s he had no understanding what the impact it really had on my life, for example when he asked me to explain what the pain felt like I'd say it's like I've been stabbed with a knife over and over and I've been riding a horse for 24 hours, you know what he's reply was "well how on earth would you know what's that like if you haven't been stabbed!!!! He had no idea, he was stuck in a time warp

What hope have we got when there consultants like that.

I know if I know what I know now I would have never had had the full hysterectomy and maybe just maybe I wouldn't be as bad as I am now

It took me 8 years for my own doctor to listen to me that something wasn't right, he use to say to me your depressed that's why your getting the pain!!! Cause my bloods use to come back normal and ultrasound was clear he wasn't interested. It was only down to me insisting and insisting that I wasn't well that eventually I got referred to someone,

When I got diagnosed with chronic fatigue syndrome and fibromyalgia they just left me to deal with it on my own

Sending you hugs to and I hope you get some relief very soon ๐Ÿ˜˜

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It's an absolute disgrace out health service. I am still convinced that my hypothyroidism is part of the trouble but can i get past an annual TSH general test which they say is OK. There is no way my Dr is going to argue with the consultant. Referring back to your response. Before I had my hysterectomy I also had a dinasaur Dr. who told me lots of women have heavy periods and pain and don't moan about it, they deal with it. I eventually saw a young lady consultant who had me in hospital two days later after a scan showing I had a grapefruit sized growth on my ovary, for a full hysterectomy. Sad thing is nothing was really cured, as now had fibromyalgia for 30+ years. diagnosed officaly for 10. Sorry for the rant. Just to let you know there are others in the same boat. Look after yourself. We all care on this site.

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