Failed ovary - is it safe to leave in ? Also -is it normal that I still feel a lot of my previous symptoms after my hyst ?

[Curlymum]

Hi - I had my hysterectomy at the end of May this year, as I had severe endo and adenomyosis. I had tubes removed and left ovary ( as very damaged by endo). They left my right ovary and my cervix in,telling me I needed to keep my cervix for my pelvic floor.

It's been a rough ride since! I felt OK ish for the first 4 weeks or so. Then started feeling unwell.... To cut a long story short- blood tests revealed my remaining ovary had failed. I've tried 3 lots of HRT and am coping on the gel estradiol at the moment.

However, I'm getting really bad pain in my lower back and left hip again?! I had this really badly before my operation. I've had scans and X-ray on hip - told they can't find anything and I'm on list for physio now ?!

I'm concerned about the ovary that has failed too.... Is it safe to leave it there or can it turn into anything sinister?

I've been getting incredibly tired again also - in fact it's more than that - I'm absolutely exhausted if I do anything mildly exerting :/

I flip from feeling my skin crawling and itching all over at night so I can't sleep - to sleeping all day and then sleeping all night after I've sorted my kids out. I still feel like I have no energy or get up and go.

Don't get me started on my moods ? Oh boy, I even hate myself, I go from calm to nuclear in 5 seconds - and sometimes for no good reason .. It's like I'm watching myself when I'm like that - and I can't believe it's me behaving like that?! Is this normal ?

I have been really suffering with migraines again too! I hoped these would be relived after my hyst - I only had s temporary break from them. My GP has also diagnosed me with temperomandibluar disorder ( not sure of spelling!) and the pain I get on the left side of my head and left side of neck is excrutiating. I'm still getting awful pins and needles in my hands? Had nerve testing done for carpal tunnel and it's not that- physio thinks it's just wear and tear and I can have injections in my hand if no better in next few weeks?!

What's really weird is I now have a numb/pins and needles sensation over the top of my left foot? It's been like this for two days solid now - never goes - just constant... Could all this be related to endo on various ligaments that I had ( maybe still have?) or am I just going bonkers?

Can anyone relate to me? How do I get sorted out? Will the moods, hot flushes, skin crawling etc start to stop the longer I'm on this HRT? ( been on it 6 weeks this week)

I feel like everyone is saying - "well you've had the hysterectomy - so there can't be anything wrong with you now"

Thanks for letting me moan... Just feel so fed up with it all.

[Mel80]

Women with endo can be more at risk for autoimmune diseases and other conditions. Have you looked into the possibility of fybromyalgia or neuropathic pain? You can feel pain from damaged nerves even though there is nothing there anymore. I would present these possibilities to your dr as well as chronic fatigue which can also be common with endometriosis. X

[thedogsmother in reply to Mel80]

I'd agree, what you're describing sounds like fibromyalgia symptoms.

As for the failed ovary my understanding is that this just means your ovary has stopped producing hormones, the same as happens to every woman at menopause, nothing sinister. x

[Curlymum in reply to thedogsmother]

Thanks the dogsmother.. I appreciate your reply x

[Curlymum in reply to Mel80]

Thanks for your reply Mel80. I did possibly think of fibromyalgia as a possibility - I've been to the GP this morning about numbness/ tingling in my left foot and he has prescribed anti inflamatories for a week. He's the same one who has given me anitryptiline for my neck pain and left sided head pain when my TMJD flares up.

Feeling rock bottom again at the moment. Been in bed most of the day as I was panicking about pins and needles in my foot and in my left a around my elbow..

I'll look into both suggestions from you. Thank you do much for your reply - I really appreciate it X

[Shelly92 in reply to Curlymum]

I think any pain you feel that is just like the pain you felt before surgery is probably endo

Healing pain feels different

And you know what endo pain feels like

Doctors will say you are not healed yet but if it feels the same it is still in there somewhere or adhesions are doing damage and causing pain

[Curlymum in reply to Shelly92]

Thanks Shelly 92

I was really hoping that this was all healing pain - but I suppose I do have to consider that it might be remaining endo or adhesions ( I have had them a lot in the past - very severe and needed a laparotomy to get rid of them - then I was filled up with adep/adex - something like that to try and prevent more adhesions, didn't work ! That was 11 years ago and I had two major ops since then )

I am supposed to be seeing my specialist in November for my 6 month check - but no appointment has arrived yet! I'm going to chase them tomorrow. I'm just worried about what the surgeon will say.

Arghhhhh.... Just want to feel well. I've been exhausted and in bed for most of the day again today. And here I am now shattered and in need of yet more sleep?

X

[Shelly92 in reply to Curlymum]

Yes it is exhausting .

But one way or another it will not be this way every day for the rest of your life.

Things are in constant motion.

And your pain will pass .

I know I read a book years ago

About this young girl I wish I knew what it was titled.

But she went thru utter hell all her teen years and early adult hood

Her life was in shambles and she could not think about planning any future or even the next day.

I can't remember I'm pretty sure it was endo

Bowel involvement the whole works.

The famiky finally went to I believe Europe to get a specialist .

It must have worked

She got better

Got married

Had children

It seems like there was some sort of meds they coated her organs with to prevent adhesions and more damage

I know the adhesions and removing them so much was making her worse and worse .

[Tboag]

Hi hunny, I had a hysterectomy in July last year, and only felt better for a few months, I had Adenomyosis so that's gone, and had endo removed from uterosacral ligaments and behind uterus, I was still in pain, and believe that the gyne had missed some endo, just had another laparoscopy and no endo found but my right overies was stuck to appendix and left to abdomen wall, he removed left one and left right, this was only a week ago, but I'm so worried that it hasn't helped me,

Was you seen in a bsge specialist centre, ???

Was all your endo removed????

X

[Curlymum in reply to Tboag]

Hi Tboag,

Yes u was seen in a Bsge centre - in Oxford... I went out ov my way to track a surgeon highly recommended on this forum - she was nice and I felt looked after - N P said that she had removed a lot of endo from my POD and from around uterosacral and round ligaments. Also freed my bladder and left ureter that had become wrapped up in it.

I hope she took it all - I'm supposed to be having my follow up appt with her in November.

I'm sorry to hear things for you are no easier.... We're you seen in a bsge centre?

I'm sick of the back pain and the pain in my left hip. I'm getting heavy pulling type pain where my middle incision ( the biggest one) from the keyhole surgery to remove the uterus. I'm just all of a fuddle -I don't know what's normal after such a big op and what isn't ? Like I say - if I mention anything about it my family just look at me with that "really?" Look.... And they've said - "well you e had the hysterectomy now so you should be fine now "

Arghhhhhh.... Yes I don't have crippling periods anymore - and I'm grateful for that.

But the hip and back pain, pins and needles and pain appearing everywhere blummin else is beginning to do my head in.

I just want some time feeling well - and like I have some energy :/

Xx

[Marcia71]

Hi there

I had hyster and BSO in Feb 2015 and unfortunately in more pain than I was as endo left behind as done by General gynae. I'm now seeing BSGE centre to hopefully get sorted out.

Some of your symptoms sound like menopause - migraines, hot flushes, mood swings, lethargy, insomnia, fuzzy head, memory problems. It really is no fun. I was on HRT and that helped - but you need a couple of months to really feel benefits so stick with it. I was then recommended an oestrogen only HRT but now know that can stimulate any endo left so have stopped all HRT for a while. Just started a new combined one (Kilovance) as recommended by BSGE consultant who also heads up menopause clinic.

Don't forget hyster is major surgery and it takes at least 8 weeks, if not longer to recover from. Head to the hysterectomy associations website for loads of useful info and chats with other ladies going through the surgery. I found it really helped me understand what was happening to me and didn't feel so alone.

Best of luck

[Curlymum in reply to Marcia71]

Thanks Marcia71

Sorry to hear you've had such a rough time

I have been told to try this gel for a couple of months as we know I've gone into menopause.... I don't know whether I'm meant to wait til I feel well or not? How do you know if you are on the right dose?

Arghhhh.... It's doing my head in - and those of my family I guess, and that hurts just as much as the pain itself!!

X

[Marcia71 in reply to Curlymum]

I can imagine. From my experience they'll keep telling you to try a bit longer for the HRT to work. But I do hope you notice some improvement soon.

[Tor666]

Have you looked into B12 deficiency at all? Have a look at this:

nhs.uk/Conditions/Anaemia-v...

[Shelly92]

Of course there is something wrong . Not in your head in your ovary .

Ppl say stupid things

I think I would try to not take any HRT for a few months.

I think then you have a chance of it dying out if endo is still there

Or maybe even the pill

So you can stop hurting long enormous to get thru menopause.

I know some have pain after menopause but I guess I finally lucked out on something

I do not have pain now all organs are still in they ate all tied together but they are in

I did not do HRT I did not do well on it

Ovary failing or dead ovaries I have heard of that said to other women and they became pg

So I guess if it hurts cut it out

I'm not a big fan of that and I have many reasons before anyone throws tomatoes.

But I definitely know HRT soon after surgery can absolutely start endo growing again

[Curlymum in reply to Shelly92]

Hi again Shelly 92 -

It's good to hear someone say it's not all in my head !

I just know my blood tests showed my ovary had failed and boy I felt rotten. The thing is - I feel better for not having the hot flushes as bad or as often, I don't get the skin crawling sensation as much ( it was nearly constant). BUT now I'm in more pain again... The thing is - if they left the ovary in, then is taking HRT no different in that it's giving me the same amount of oestrogen as the ovary would have? Or am I missing something there?

All I do know is that the pain in my lower back and hip is killing me. I've also noticed my boobs feel full and heavy and very sensitive .... Now what's even weirder is that they feel like they did when I was pregnant?!?! Now I know I can't be beating science by conceiving without a uterus.... So what is this all about?

I guess I thought ( naively it would appear) that I would feel much better after my hyst ( I at least expected a year or two of feeling ace ) and that maybe if I was unlucky - the endo might rear its head again in the future.

Thanks again for your replies, and don't worry, I'm not throwing any tomatoes - "each to their own" I say xx

[Shelly92 in reply to Curlymum]

I know a lot of women with endo also have very tender breasts .

Don't know the connection but can guess .

I would start getting Breast tenderness, , and by that I mean. Don't come near me or hug me or touch me for two weeks every single month .

Most others that did not have endo did not have 14 days of severe breast tenderness including getting fuller and bigger .

I kept asking doctors for years

Why do I have this the min I ovulate until right before my period .

A couple days before my period my body must have known to stop producing hormones and the soreness would start going down.

I never knew why

Still don't

But I bet a lot of others here had the same odd thing .

Your breasts could be tender with hormone changes or meds.

Your body kind of goes thru crazy mode

To much hormones some days

To little others.

I think it's all part of the change

As far as tour other ovary you can only decide what to do.

Because of the difference and utter insanity of this disease.

Some will get relief with all organs out

Some keep getting pain until after the age of the menopsuse happens

I think it is because of hormones in your body that irritate any endo left .

No dr has the right to claim that we should just take it all out then you'll be fine

No periods

No pain

The truth is that's it's not always the Truth

[Curlymum]

Thanks Shelly92

I have always struggled with breast tenderness - it even used to go up into my armpits - really sore!

I did have benign breast lumps removed when I was a lot younger - one in my breast at 18 yrs old and one in my armpit at 21 yrs old.

That pain I thought was history now that I'm not ovulating - but it would appear not!!

I know that I will discuss all of this with my surgeon when I see her at my 6 month check appt. I don't want yet more surgery, if I can avoid it.... I just want to know what problems ( if any) can be related to leaving a dead ovary in, if I'm still getting oestrogen through my HRT.??? Hopefully I'm worrying over nothing, but this awful disease has caused me all sorts of trouble over the years - and I find specialists, GP's etc are hard to see and then they don't all seem to understand just how awful you feel.

I'm so exhausted all the time - no amount of sleep seems to help!?! My sleeping pattern is erratic due to restless legs, pain in my back and left hip, pain in my neck and left side of my head. Nausea, the deep gnawing pelvic pain (that hasn't fully gone?!)

I'm grateful for not still having the horrendous monthly's I used to have.... But I'm far from feeling "better". Not sure I know what that or "normal" would feel like anymore

X

[Shelly92 in reply to Curlymum]

Curlymum

I think you will get to a day soon where you will know hi to feel good

You are going

And that disease lets people get into doubting mode easily .'

It feels like everything is broke .

Some is related to endo but a lot of it is not

Neck pain I had a four disk fusion

Would not recommend it

For that

Vitamin D

Vitamin E

Lots

Nausea vitamin B6

Throw in magnesium

Calcium

Keep them in frig

Magnesium helps with sleep

Amino acids are usually always deficienct in cause not a lot of foods have them .

There are many many natural things you can do to stop all that inflammation

That's what I found

Almost all my life every health issue has been

Auto immune

And

Inflammation

So look to that

Not sleeping is HUGE!

Find a way to resolve it .

There are two many reasons and ways to fix it

And my books are to long Lol

Once we get into a pain mode cycle it's hard to break

And can cause all kinds of crap

Depression

Nausea

Not sleeping

But I know you will be pain free or at least functioning in things you want

And that's prettty great to