Granulation tissue vaginal vault - Endometriosis UK

Endometriosis UK

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Granulation tissue vaginal vault

HellyLlewelly profile image
6 Replies

Hi Sisters,

Just found out I have tissue granulation on my vaginal vault 17 months post hysterectomy bso cervix removal For adenomyosis and endometriosis, menhorragea dismenhorea.

Other than painful sex, has anyone had this tissue granulation giving them other symptoms????

Ive had painful sex, Reoccurring thrush post hysterectomy, itchy labia/dry. What I was assuming was smell of strong urine possibly a strong odored clear discharge thats more acidic or like ammonia than anything else (strong in underwesr after thorough clean post urination.)

Visible change in my scent post hysterectomy. Im 17 months post Hysterectomy bso and cervix removal I just went private to be examined and told I have a noticably uncomfortable area of over healing at the top of my vaginal sock/vault - "Granulation" I was on v v v strong painkillers yet I winced when he swabbed over this pollyp of over healed tissue with an instrument. Areas around it in the vagina were otherwise not overly sensitised.

Im trying to find out if this solely could cause what feels like return of either endometriosis or adhesions (PAIN) which were previously in my pelvic cavity. My bowel was shaved of endometriosis.

Im in constant daily debilitating pain.

The pain is same moving around coccycs area to sit bones radiates down one leg or the other. I have painful BM again, feeling of stool going through a rollercoaster inside me, dropping through every turnpipe, frequent urination again sometimes feels like IC.

Stabbing pain both abdominal lower areas left and right.

Frequent stooling especially AM.

More mucossy stool.

More flatulence than ever.

Sometimes pain relieved on ongoing evening flatulance.

Stool can be beige/yellowish in colour quite often and ongoing from around January 2019.

Pain had me debilitated and living life from my bed. Shuffling, existing, hating life in pain.

Possibly paying for 2nd private surgery as no quality of life.

Choosing a (edited in line with code of conduct) recommended endo surgeon general this time who has experience with bowel, ureter, gall bladder and appendix endometriosis Excision BSGE accredited surgeon MIGS trained.

Im really struggling and tbh dont feel I want to go on.

This pain is too much, too long and I am not a safe investment.

Surgery possibly £5400

After paying 6k already on private hysterectomy.

Im actually flitting between suicidal feelings and the feeling of fighting FOR MY LIFE some more.

This has been 15 years of surgeries and Ive made my peace and I dont know If I want the recovery again.

Im not weak, Im exceptionally challenged, horrendously painned and my spirit is broken, even more so than before my Hysterectomy.

Im a broken woman.

I cant do this anymore Sisters xxx

mended to find

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HellyLlewelly profile image
HellyLlewelly
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6 Replies
KimPV profile image
KimPV

Hey hellyllewelly, I have no idea of the pain you’re going through. But didn’t want to read and run, you have got this far. Please continue on, you are worth it and have so much more to achieve.

I’ve had a hysterectomy in jan of this year so totally know the recovery process is long and hard.

But please please don’t give up.

Xx

HellyLlewelly profile image
HellyLlewelly in reply toKimPV

Thank you so so much for your concern.

I dont think the medical community are capable of understanding the trauma we have been through.

I believe other women in our ehoes are the ones who can offer support and guidance.

Ive written an email to my GPs office the top partner and my Dr to explain the let downs and trauma of being an NHS patient these days.

The waits, the misdiagnosis the lack of support and empathy.

I feel very traumatised through all of this.

Thank you so much for stepping in to offer me consolation feel free to PM me any time at all.

We are all sisters in this together xxx

newstart2020 profile image
newstart2020 in reply toHellyLlewelly

Good lord that's a bonkers amount to be dealing with all at once Helly, you must have the heart of a lion.

I found this forum to get info on adenomyosis which consultant (edited in line with code of conduct) spotted on ultrasound for me on the Monday before Xmas. I'd seen him before for two Stage IV endo surgeries in my 30s. I've been bending my partner's ear all week about a mispositioned mirena (either that or it did its own wee dance down to my cervix all by itself), and the staff who at the same time didn't update my address so I didn't get know about the consultant appointment and was booted off his list... Not to mention that my mirena was never checked.

However, reading the posts on here has given me perspective I never thought I'd get. I'm in pain and discomfort most of the time, but I'm able to work. I'm typing this in work lol. And I can go outdoors as long as I can wear a dress. And I know I'll get an appointment with (edited in line with code of conduct) in January to get this damned useless frigging ineffective coil out and a sparkling shiny new one put in. And that if the mirena, which was brilliant for endo doesn't work for this new-fangled adeno, that I can consider a quick hysterectomy if it's worth it (I'm in perimenopause).

I ended up joining Beneden for £12 a month to get myself bumped up the consulting waiting list and the subsequent procedure waiting list. They don't cover everything but I'd still be limping about this time next year wondering about my sanity if I hadn't.

I really hope you get a bit of relief. It all just seems so... barbaric, the way we're treated and the way these diseases and conditions are dealt with.

HellyLlewelly profile image
HellyLlewelly in reply tonewstart2020

Hey!

Im 41 this month are you around my age?

I felt periM at 36! I was convinced I was, so many symptoms that rapidly multiplied.

Adenomyosis can be suspected on MRI but depending on how your womb was preserved afterwards or what section was looked at under the microscope it can come back neg for Adeno.

I believe mine was 100% in my heart of hearts an Adenomyosis womb (was also confirmed on mri) yet pathology said no!

Heavy bleeding and pain with pain being the worst of the two. Internals hurt for days and painful intercourse my cervix was always being "abused" shuddering pain down thighs, the marena did not agree with me in the slightest both pain emitting & spotting constantly, bore it 8 months before almost having a collapse in pain and family planning took it out.

Pills dont agree with me in any form ie mini pill or consecutive one etc, bad side effects.

Its strange as im great on hrt and no headaches anymore. I suffered severe hormonal migraines.

The steady dose is obviously agreeing without the peaks & dips.

Where was your endometriosis located in the past?

How did you get staged?

...

Hysterectomy didn't do 0 for my endometriosis as was extra pelvic organs//cavities too.

..

Expert excision of ALL endometriosis seems to be the gold standard.

Have you joined (edited in line with code of conduct) its great for the reading library.

Before the Nook I thought my hysterectomy wd cure everything 😥 oh how wrong was I.

It did get rid of my "bulky" uterus dodgy cervix & contractions & bleeding....Id still do it again just didnt realise Endometriosis was gonna be on other organs etc. I had no education and thought it was a Uterine disease.

Feel free to DM

Me if ever you want to chat x

newstart2020 profile image
newstart2020 in reply toHellyLlewelly

Heya, happy new year and hopefulness and all that! I reckon I had endo from teenage years. Zero diagnosis until early 30s when (I do not know how, because endo 'doesnt show up on scans') an internal ultrasound sent the scanner running off for the consultant at the Ulster Hospital, who said suspected endo, then I had a keyhole lap. Stage IV endo diagnosed at that point, they managed to detach an ovary from the wall, it had been embedded. I've always had mad week-long period pain, plus lower back pain more or less all month every month since teen years. Post lap, I was given depovra injections for 6 months as the lap and excisions did nothing at all for pain and discomfort. I try to blank out those 6 months. It sent me utterly utterly demented with maybe a 3% reduction in pain. But mostly I was demented, and put on 2 stone. Then a bit later, a lap (not keyhole) removed more endo, but again, no help for the pain at all. Just a long painful recovery time.

Then maybe 5 years later someone suggested the Mirena. Told me it took 6 months to settle but then worked great for endo pain. That's exactly what it took for me. It was brilliant. So was the second one, I can't believe I was so lucky. Third coil is awaiting removal as soon as I get consultant's letter to who will then approve the procedure. I'll get another put in by (edited in line with code of conduct) as uterus removal will be last ditch for me, and it wouldn't help with the endo anyway. Adenomyosis is a new thing for me. I have textbook symptoms and I'd never heard of it. It's a pity the last coil I've had in was ineffective because it was incorrectly inserted/migrated to my cervix. I'd been putting my symptoms down to peri menopause which I've been in for 2 years. Before I saw this last consultant, I was getting to the snake-oil stage! When I'd been on this particular coil for maybe a year, I went to another consultant who did no physical checks. I told him about the pain and discomfort and feeling like I was going mad, and he put me on progrestorone only pill as an add on to the coil. So I was on the pill as well till last June. I came off the pill because my hair was falling out and other tests didn't point to anything obvious so I thought I'd eliminate the pill as a cause. All these adeno symptoms only really kicked in big time since I came off the pill. Because the coil was being completely ineffective. Hence back to consultant last December. It's all a bit of a mess. I'm going to get the consultant to knocke out for the old/new mirena. I never asked if I had endo anywhere else, I stupidly assumed they'd tell me. I think I'll ask for my notes...

HellyLlewelly profile image
HellyLlewelly in reply tonewstart2020

How utterly disappointing that you went on Depo P and you had laparotomy to treat Endometriosis.

Minimally invasive surgery is the gold standard.

Im gonna do a proper reply to you later on PM.

You sound like you have been treated similar to myself and like those caring (cough) for you are stuck in the medical dark ages!

X

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