T Hysterectomy with the Ovaries/Tubes/ Ce... - Endometriosis UK

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T Hysterectomy with the Ovaries/Tubes/ Cervix removed - Period Symptoms 🤔

HellyLlewelly profile image
9 Replies

T Hysterectomy with the Ovaries/Tubes/ Cervix removed - Period Symptoms 🤔

Hi, after having this all removed ^ Im 7 months past my Op yet at least 2/3 months of the times thats past I have been feeling period type back pain/cramp, when I look at my calendar it is bang on the dates my menses would have been due?

I was also notably ratty and hungrier, the vague imprint left of the stabbing mid cyclical ovulation pains can also be felt?! Many of these just like my pre op symptoms but no where near as intense of course in a pain ratio of like 1 post Op to 10 pre Op....

Is this possibly the endometrial cells left over from my Op?

I hear they "bleed" as they are cells of the womb which naturally shed at the T.O.M?

I am convinced they never get it all during surgery as even my surgeon said "not possible" due to risk of "organ perforation " ie to shave the bowel too heavily and possible perforate it - it was mainly extensively on my (of my kept organs) Bowel.

Its an interesting talking point on this forum? Yes?

I am on both hormones still, as in HRT combined patch for 1 year to cover endo regrowth.

I may post this on a few Forums on Health Unchecked as not necessarily all who have endometriosis have had a hysterectomy and its interesting....

Thank you

Helly!

9 Replies
HellyLlewelly profile image
HellyLlewelly

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girli1111 profile image
girli1111

I’m afraid this is not much use to you, but I am interested in this post as I have a colleague experiencing the same as you, and really struggling with cyclical pain, she too is on hrt, but I think just oestrogen. I have had both ovaries and tubes removed, but still have my uterus (wasn’t removed, not least of all as stuck to bowel). I’m on combined hrt (sandrena and utrogestan) and haven’t had recurrence of endo symptoms so far (15 months after surgery). After my surgery my hormone levels were checked as surgeon was not convinced that she had managed to get all of my ovary (I was in quite a mess!) at that time she mentioned that if any ovary is left behind there is a possibility that it can regenerate, and I am wondering if something like that may be the cause of your symptoms and those of my colleague. Alternatively it seems logical to me that hrt level could cause endo to be symptomatic, somperhapsmthat needs to be adjusted. Wish I could offer some advice, as I know how incredibly frustrating this is for my colleague. Her gynae is considering another lap... but she’s not keen as doesn’t want to risk further adhesions. This is such a vicious circle! Best wishes x

HellyLlewelly profile image
HellyLlewelly in reply to girli1111

Thank you for you imput! Im so pleased you responded! - very kind of you!

Are you on tablet HRT?

Im consideribg the change to from patchas not entirely sure my uptake is even, patches can move about, crease and be troublesome!

Congratulations on the feeling of no symptoms, how are your energy levels now?

I may go private back to my surgeon/gynae for bloods.

Its a much faster way to grt my levels checked. My GP has insisted they cant interpret them?

Id love to speak to your friend who believes her symptoms are possibly are returning.

In my case Dr Hunter told me prior to my Op that to have a total removal is surgically an easier thing for him to perform, as he had asked my why I wanted both ovaries removed and I had said cyclical stabbing pain, ovulation pain, extending my family not an option, convinced my ovaries were my source of pain all these years.

I still dont understand how the progesterone portion is meant to help with the regrowth of endometriosis? It hasnt been explained to me.

Im 100% taking it and fear progesterone is responsible for some icky side effects like my tiredness and possible aches in my upper arms & shoulders.

It made me wild sleepy during pregnancy.

Im certainly not feeling the benefits of the "feel good hormone" now.

Im actually not experiencing good energy levels at all on this patch hrt, Im on Evorel Conti Combined.

Regards

H. Xxx

girli1111 profile image
girli1111 in reply to HellyLlewelly

I’m on tablet progesterone and gel oestrogen (sandrena). I was offered gel rather than patch as I swim a lot so gel goes on before I go to bed. I had a referral from gynae to a specialist menopause clinic as I’d previously had a DVT. My understanding is that the progesterone part is to prevent my uterine lining from thickening. My energy levels are really bad to be honest, but I have rheumatoid arthritis so it’s tricky to know what is menopause and what is RA. It’s all a bit trial and error!

HellyLlewelly profile image
HellyLlewelly in reply to girli1111

Thats completely understandable that the progesterone will keep your lining in tact (i hope it has and kept you period free)...do you like putting a gel on? Im so over comscious of things not entering correctly Im so paranoid when my patches fold or crease. I might switch to tablet form because of these worries. Im on Evorel Combined patch and the progesterone portion was said to

Keep endometrial cells at bay and this makes sense as essentially they are the lining of the womb.

Im so intrigued as to when the Endometriosis grew, was it when the progesterone level dropped every monty to allow us to have a period, even growing during period and then until the P level grew high enough to stop the growth? Im purely surmising and Im just fascinated to why this culprit grows outside the womb and why sp many of us are really suffering with this affliction.

It has cost me jobs, relationships, friendships, life experiences, fitness level, happiness, finances on Super strength sanitary items heat pads and medicines.

I really want to understand it more.

Im 7 months post hysterectomy and still feel like endometriosis will be a returning visitor in my life.

Hooing it wont be!

Regards

H.

girli1111 profile image
girli1111 in reply to HellyLlewelly

I’m sorry that you’ve had such a rough time of it. The severity of my endo was a surprise to me as apart from rupturing endometriomas I had few symptoms (well, always long painful periods, but took that as normal!). Regarding the gel, it’s ok to use, but takes a while to dry, I guess patches are more accurate dosage wise. I really hope you find a solution that makes things more comfortable for you, endo is the pits x

HellyLlewelly profile image
HellyLlewelly in reply to girli1111

Thanks Girli1969

I hope we get solutions.

I really hope some scientist is in a lab working on a cure for Endometriosis.

I just feel like if I could get a handle on the back pain I could perservere more through the rest of my ailments and I could get a bit of a quality of life back.

There are days I really feel that Ive lost myself completely.

I dont know who this is in the mirror looking back at me.

I keep trying to remember lifes blessings and all the positives I have in mt life to counter these bad feelings.

Thanks for listening.

Helly

X.

ccsmith profile image
ccsmith

My consultant who is doing my surgery in December said that due to the extensive endo he will not make me pain free. He was honest and said he can dramatically reduce it with the surgery. Maybe it’s the same for you as your endo sounded widespread as well.

HellyLlewelly profile image
HellyLlewelly in reply to ccsmith

Yes I think you could be right as my consultant didnt know I had endometriosis just the adenomyosis so Im sure when he was confident Id be pain free without my boggy womb he was thinking that was my lot.

I made his job easier by not requesting 1 or both ovaries left, he explained that its an easier operation to remove all rather than leaving organs behind.

I was confident he got it all bar microscopic cells as even he said its impossible to get all cells for the risk of perforation of say the bowel.

Im very confused as my symptoms mildy co-incide with bowel movements and and flatulence on occasions has given relief but the searing bearing back pain, radiating, seems to be in my back permanently and its really irritated by leaning my spine to the right, I feel stiff and taught down the left and such activity as hoovering is really putting me to bedrest with pills.

Im 7 months post Op and to some could be considered early doors still.

Im so bloody frustrated that my life hasnt kickstarted yet.

Thank you for this important point!

H.

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