POP: Im desperate for a diagnosis and... - Pelvic Pain Suppo...

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Livesreading profile image
19 Replies

Im desperate for a diagnosis and help! My GP has referred me to gynaecology who cannit find anything yet I can still feel lump in vagina. Itsikecsitting on a stone! Any suggestions?

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Livesreading profile image
Livesreading
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19 Replies
SraB profile image
SraB

Hi! Don't panic. This things are usually not urgent but very annoying. Maybe you can explain more, have you been to the gyn or is the GP who cannot find anything?

Livesreading profile image
Livesreading in reply to SraB

Hi, thanks for responding! I felt a strange sensation, a bit like sitting on a stone, about five months ago. My GP suggested I see a gynaecologist although I hadca hysterectomy many years ago. I went privately and she said everything seemed fine but recommended I see gastro guy who ordered CT scan which didnt show anything but inflammation in spine. Now im stuck. The sensation is worse, and it is making my life a nightmare!

SraB profile image
SraB in reply to Livesreading

It is heart breaking when they say everything looks fine but you know is not! So we have to keep looking for answers. If you can feel a "lump" what did they say that was? Or they couldn't feel it? Is it worse now? If its in the vagina the best idea seems a second opinion from gyn, if you can choose maybe one specialized on prolapse. What do you think it is?

Livesreading profile image
Livesreading in reply to SraB

I think its a prolapse of something but dont know what! When doctors says it isnt what they first thought, its hard because its back to square one

Miriam123 profile image
Miriam123 in reply to Livesreading

It certainly sounds like a prolapse. Maybe a rectocele. This is not always apparent when lying down for a pelvic exam. Could you ask Dr to check you when standing up.

What other symptoms do you have. Hope you can get it sorted.

Livesreading profile image
Livesreading in reply to Miriam123

Thankyoy Miriam, strangely i have occassional tingling in my leg. The sensation of fullness in vagina, buring in bottom is unbearable. I score discomfort on scale of 1-10 and some days its as high as 11! Do you have this condition?

Miriam123 profile image
Miriam123 in reply to Livesreading

I used to have those symptoms before I had the surgery. I had a lady surgeon who was fantastic. She actually listened. I had rectocele surgery and 6 months later a cystocele. She didn't want to do both together because of my age. (80). I'm not saying it was a breeze but as soon as I put my feet to the floor the day after the surgery I knew it was fixed.There are a few weeks of discomfort while the plumbing system gets back in gear but now I have no pain and I walk everyday between 4k and 5k.

and sometimes up to 8k. So if this is your problem it can be fixed. I did try a pessary but since I already have a hysterectomy 30 years ago it did not work for me.

Persevere and if it is a prolapse I'm sure you can get it sorted .

Wishing you all the best.

Livesreading profile image
Livesreading in reply to Miriam123

Thankyou so much for sharing your experience with me. It is so encouraging to know there is hope. Hopefully I can get a diagnosis soon. You are very brave Best of health to you

Livesreading profile image
Livesreading in reply to Miriam123

Sorry i meant to ask what type of specialist can diagnose and treat a retocele?

Miriam123 profile image
Miriam123 in reply to Livesreading

A gynecologist is the usual go to person. I had a female Dr. The men I saw said that the pain I was having was not caused by the prolapse!! One said that i had diverticulitis even though I had a colonoscopy which showed no evidence of this. Just wanted to put a name to it. And he was a bowel specialist!!. Make sure you are listened to. You know your own body. Hope you get help.

Livesreading profile image
Livesreading in reply to Miriam123

Thankyou so much. Im still trying to get an official diagnosis but so far no luck it takes such a long time to see anyone! Meanwhile im still sitting on a 'lump' feel something in the vagina and episodes of shooting pain under my butt cheek. Its unbearable at times but Ill keep going and hopefully find a solution soon 😏

Skye22 profile image
Skye22

I have rectocele prolapse and levator-ani syndrome which causes painful spasms in pubirecalis muscle, pain when sitting and a fullness that you can feel after defecating. A bit like you feel you haven't emptied properly.It was my specialist womens physio who diagnosed this issue and she does vaginal trigger point therapy which helps a lot.

My medical team are all women who I feel really understand womens anatomy better and the issues that can happen. I had a bad experience with male consultant who just palmed me off with an appointment with the pain clinic and not addressing my constant pain and symptoms.

Sometimes we have to fight or in my case change doctors to get the correct diagnosis and treatment.

Hope you get the help you need to address your symptoms and a treatment plan that works for you. Stay strong!!

Livesreading profile image
Livesreading in reply to Skye22

Thankyou, Ive had similar experiences with male doctors. I was wondering whether surgery is an option?

Skye22 profile image
Skye22 in reply to Livesreading

It would depend on diagnosis, but for me it's ruled out. I've had 13 previous surgeries and have adhesions on Bowel, bladder, pelvis and abdomen.Not at any stage was I informed that surgery can cause more adhesions resulting in being left in more pain than I originally had.

I'm lucky now to have a great medical team who help with condition management. Physio, injections and meds.

I would always ask for a second opinion if unsure about diagnosis or possible treatment plan. Surgery would be a last resort.

Wishing you good health and stay strong!!!

Livesreading profile image
Livesreading in reply to Skye22

Thankyou, i appreciate your help. I think getting a diagnosis is half the battle. You certainly have had a lot to deal with, im so glad you have found a way cope. Its so encouraging! 🙂

suzie44na profile image
suzie44na

Hi, you don’t have Tarlov cysts do you these are usually seen on MRI scans and are often reported as like sitting on stones, just a thought. Doctors do not believe they cause pain but they do. There are only a few neurologists that specialise in them.

Livesreading profile image
Livesreading

Ive never heard of them but worth checking out, thankyou

Spanielgirl profile image
Spanielgirl

So sorry to hear about your horrible situation. This is a good place to be, sharing with others who are also suffering. Reassurance and support is uplifting and a great comfort . Try and remain positive, easier said than done I know and be clear and well informed when you’re with the professionals. It’s your body and who knows it better than you. Take care and good luck with an acceptable diagnosis and a way forwards. x

Livesreading profile image
Livesreading in reply to Spanielgirl

Thankyou so much, Ive found the response here wonderful, very encouraging 🙂