Please can anyone help?

[Carla3674]

After months of agony I got referred by my gp to a gyni consultant. He said my symptoms sounds like pelvic congestion syndrome or endometriosis, we need to book you in for a laperoscopy. This was 2 months back & omg I was in a&e x5 in a few wks! Left side groin pain, constipation & actually passing poop has be painful to say the least. Nauseous then the shooting pains into the groin would not give up. I’m on a lot of meds due to other health conditions so they couldn’t do much apart from telling me to take tremadol around the clock, paracetamol & they put me on mefenamic acid. Which wasn’t really helping. They moved my laperoscopy forward and it was last Monday I had a different surgeon we went through what my original consultant said he wanted checking out. I apparently don’t have endometriosis but she did an ablation, & took a biopsy, put me on hrt for 3 mths & in her opinion she didn’t check the PCS out as she thought I didn’t have it! She hasn’t got to the bottom of my pain! Now the shooting pains are back but they more intense and now pain in my right upper thigh. It’s horrid, & pain when I wee, I can’t seem to empty my bladder, when I rang the hospital they said it would be a uti, but it came back clear. I thought that would just ease off but hasn’t. It’s driving me crazy and still no further forward I don’t see my original consultant now till July. 😩

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[Starry]

Endo can grow anywhere. Given your symptoms, have you had a cystoscopy to check for endo inside bladder or sigmoidoscopy or colonoscopy to check for it in your bowel?

Has the surgeon discussed the possibility of adenomyosis with you, Endo inside the uterus lining?

There is a condition called interstitial cystitis which mimics water infections but never shows an infection, it is often associated with endo. Google ic help to find the association for it.

Perhaps worth also getting a full op report from your surgeons secretary to see if the pouch of Douglas was obscured (endo can be hard to see there apparently) and if utero sacral ligaments were also checked, they are endo locations that often cause back pain.

Good luck xx

[Carla3674 in reply to Starry]

Thankyou that’s really helpful.

So yesterday I ended up getting checked out on the gyni ward as I was in pure agony from the shooting and stabbing pains in my groin & top thigh of right leg.

He said my leg pain is probably nerve damage when they were doing surgery! They have basically signed me off as now back to square one. Going to GP to now say gyni think it’s my bladder or bowels causing all the pain? It’s so frustrating I just want to get to the bottom of it all.

[Starry in reply to Carla3674]

Huge hugs.

I also developed the shooting pain in my legs feet and coxxcyx after my surgery too, though not quite as badly as you describe, and not from my diagnosis lap but my treatment lap. Yes nerve damage in pelvic surgery is a risk and isn't really ever discussed beforehand, at least for me, my conversations were all about the risk to the bowel which is a far bigger severity risk I guess.

Initially my surgeon said the nerve pain was good as it meant the nerves still work (!) so I guess my surgery was near a big nerve centre. Try not to worry though as apparently it does often settle and resolve itself.

Mine over the 9 months has diminished a lot, it has stopped being bad pain that stops me sleeping like it did and become more pins needles and tingling. It's just a thing I manage now, but sadly it's not gone away completely.

I do now have to use a u.shape coxxcyx cushion to minimise the pressure and I also take pregabalin as my pain nerve centre in general became oversensitised. Www.retrainpain.org explains that well and some techniques for managing unhelpful pain.

Hope this helps xx

[Starry]

If your in the UK and it was a general gynae, then given your bowel and bladder symptoms another option is to push for transfers to a bsge accredited specialist endo centre where cases of deep severe endo affecting the bowel are treated. The surgeons there have more specialist training in endo and surgery so are best placed to treat you once diagnosed but probably a much longer wait. Perhaps you could ask for photos and get a second opinion from one, or get a private initial consultation to see if they will take you on their nhs list. Just ideas.

[Carla3674]

Bless you, you have it all over, it’s good to know it’s deminished a bit for you.

I already have chronic back pain & had L4/L5-L5-S1 fused along with fibromyalgia and chronic fatigue, so it isn’t helping my sciatica but hey ho. I get my back injections next month so hopefully that might just settle things a little more?

Yes I sleep with a pillow between my legs as it definitely helps take the pressure off.

So how are you doing now with your entrometriosis & pain & how long has it gone on for you hunni? Xxxx

[Stillsomehopes]

Hi Carla,

Sorry to hear about your pain. Have it resolved? Please have a look on PCS symptoms. As PCS patient, your symptoms sound like PCS to me. The diagnosis involved contrasted imaging and venogram. Good luck,