Tired

[Jennyjenjen01]

Hello, I hope you're all well

I've been trying to cope with a pain condition for well over 5 years now. Started with rectal and back pain mid month and now it's become a case of just 1 week out of a month (post period) where I don't experience pain and symptoms.

I had a laparoscopy in 2021 and this was negative. I paid for a private mri which showed Adenomyosis and a small amount of endometriosis.

My Gynae team have been pretty unhelpful, I've been made to feel like a hypochondriac and have been told to seek psychosexual counselling! I see a pelvic physio and have had a ganglion of impar block for pain management. I take co codamol daily and oramorph when i have a "flareup"

The past few months, I've kept close eye on my symptoms and wondered of anyone else has a similar experience..

Ovulation up until end of period;

pain, pinching dragging on the bottom right.

Back pain, lower right.

"Feeling of UTI"

Skin symptoms- vulval eczema/dermatitis & thrush

Eczema flare up on leg

I have very sensitive skin at the back of my arms/shoulders. Feels like a burning sensation when touched. This worsens around this time.

#

[SavageGold]

Hi there,I probably won't be too much help but here goes...

The eczema is likely your immune system over reacting as your nervous system is in pain from being in over drive. I have a client like that who can't bear the towels touching her face, and she can't handle my hands, so I use a theragun for her massage.

Second the pinching pain and dragging pain and back pain matches myself and horrendous bowel pain that stops me doing my job. I over dosed on co codomol at work last week to stand up and no poop myself.

I've seen 3 psycho sexual councillors. One said there's nothing she can do, it's not in my head it needs diagnosed physically. One increased my Depo injection which took away the symptoms briefly. And the third recommended the pelvic floor wand to relieve the hypertonic pelvic floor which should help the UTI feeling and some back pain. But that's all just management.

If you don't mind my asking, what exactly did you say to your GP to get your referral letter for an mri? And what did you look for in the private hospitals details to find a radiographer who can see endometriosis on your scan? I'm getting a phone appointment today to get a referral letter but the endometriosis centres in Scotland don't have a radiographer. They seem to just go straight in with surgery.

[Jennyjenjen01 in reply to SavageGold]

Hello, I'm so sorry I haven't replied sooner, my emails had been going into spam!

I paid for the MRI privately, via vistahealth. It was £250 so pretty expensive but I was desperate after being told it was in my head and there was nothing else they were willing to do on the nhs. I had a consultation with a Dr via vistahealth also. I am lucky enough yo work in the local hospital so I asked for a gynae radiographer to have a quick look for me because the report was wishy-washy. She spotted the Adenomyosis and scarred ovaries (possicaused by endometriosis)

I can't believe how many people are in the same situation and being let down 😏

[SavageGold in reply to Jennyjenjen01]

I'm glad you got an answer in the hospital where you work. It seems to be the case that the pathways to treatment are deliberately blocked up.

I'm amazed how cheap your MRI was! Mines is over £700 that's without the £201 pre consultation. That's at a bsge accredited centre.

If I just want the scan ready to take to the NHS I can get it for under £700 closer to home but without dye so may be not as useful.

[Jennyjenjen01 in reply to SavageGold]

You're right, they are blocked up and until you have flashing signs of a diagnosis, no one will touch you (and in fact, some medical professionals would sooner gaslight you than admit they do not know the answers)

To be honest, it was a basic MRI gynae, no dye. The report was pretty sub par and vague so honestly was not worth the money anyway, had I not be fortunate enough to be able to get a second pair of eyes via work!

Wow, £700 is a lot!

[Cailleach]

From your symptoms it sounds like you may have more extensive endo than was seen on the laparoscopy, which depends on the experience and specialist training of the person doing it, which I am presuming was a general Gynae.

It might be worth your while looking for an endo specialist for a private consultation, as the Gynae team seem unhelpful.