Endo with nerve involvement

[Forest_Green]

I haven’t yet been diagnosed with Endo, however, it’s highly suspected due to my symptoms and pain.

(All tests and scans have revealed nothing, including an MRI with and without contrast.)

It started with periods becoming severely painful and affecting my ability to walk. (Plus many other symptoms.)

Since my last period, back in July (I’m now on a double dose of Desogestrel, which seems to have stopped the bleeding) I’ve had persistent pain in my lower left pelvis (it used to be just during, and the week after my period) and left groin and hip.

I also developed hypersensitivity in my left side from the waist-down. Gentle touch hurts. Sensation in my left lower body is changed and my left leg and foot feel constantly tingly/fuzzy. I get a pins and needles feeling very often in my left leg/foot.

I have pain that goes from my lower left back, down my buttock and all through my leg and into my foot. It can be a sudden sharp pain or a dull ache, or a cramp-like pain. The pain moves around.

My pain is constant, while its severity fluctuates. Although, the past 1.5 weeks, my pain level has been consistently higher again, and then suddenly blood appeared four days ago (old, brown blood) and my pain is getting me so down.

It’s clear the nerve pain is connected to my gynae symptoms now, as my gynae didn’t believe they were. I felt they were, but he wouldn’t have it.

Can anyone share their experience with nerve pain and Endo?

Can anyone relate to any of this?

Looking for similar experiences, as I have been convinced for a long time it’s Endo on a nerve, but my gynae doesn’t think so.

TIA

[Hello33]

Hey so sorry to hear what your going through! us woman got the short end of the stick! I have similar symptoms to you! I've recently been diagnosed with deep infiltrating endometriosis but I've been in constant pain in my lower left side the pain changes often some days ok other day I'm curled up in a ball. I've noticed my pain spreading now in my groin and going down my left leg. I actually have a patch of skin on my foot that when touched goes like pins and needles I've never put the two together. I was told by my Drs before the scan that the MRI might not show anything even though it probably is endometriosis. So even though your scan didn't show anything doesn't mean it isn't there! Your pain is real and your not going mad. Keep fighting on! I think the only way for you to get a diagnosis now is to have an exploration a laparoscopy by your gynaecologist I wish all the best x

[EndoCoeliac_Woman in reply to Hello33]

Hi,Yes. Same exact type of pain and location. I had months that I couldn't fall asleep. Couldn't sleep on the left side because the pressure of the leg on the bed was painful. My boyfriend couldn't put his hand on my tight. After surgery that removed scar tissue on the left ovary that pain improved. But it comes back depending on the hormones. When I'm under birth control it's better. Are you under any hormonal treatment? There are very expert surgeons that do "nerve spairing " surgeries to release the nerves from endo. You might look it up in you country.

[Forest_Green in reply to EndoCoeliac_Woman]

Thank you so much for your reply.

I too, cannot lie on my left side. It’s tender all along from my waist down all along the left side of my thigh.

I’ve been struggling to fall asleep, but the dr has finally put me on nerve pain meds as well as Endo pain meds; gabapentin and naproxen, which knock me out at night and I’m sleeping great but I am dealing with drowsiness and dizziness during the day as a side effect.

The hypersensitivity in my left side means I can’t deal with being touched either; it feels both strange and hurts simultaneously. I have to keep reminding my partner not to touch my left side lol.

Yes I’m now on a double dose of the progesterone-only pill. Have been since July. Was on the normal dose of one a day but it didn’t stop my periods in any sense and the pain was just as severe. I couldn’t walk due to the pain, still.

I’m still getting bits of bleeding when I would be due, and the days leading up to it make the nerve and Endo pain worse. But both pains are always present regardless of any bleeding. The bleeding would be far worse if I wasn’t on hormones though.

My left groin, hip and lower left pelvis is the source of my main and most persistent pain. It’s not nerve pain though in these locations.

Although, and this may be TMI, I get nerve pain as well as the numbness/altered sensation in the left side of my vagina. I get pains shooting through there that kill me when they do.

After begging, the dr has referred me to an Endo specialist in my area and now just waiting, as usual.

Also waiting on a neurology and a pain management specialist referral.

[EndoCoeliac_Woman in reply to Forest_Green]

If the hormonal treatment is not helping you might consider surgery because sometimes scar tissues form and they give you the persistent symptoms (because they are always there, regardless the hormones). Let us know what the endo specialist says!! ❤️‍🩹

[Forest_Green in reply to EndoCoeliac_Woman]

I’m desperate for surgery. I want it more than anything (which sounds nuts, I know) but I’ll do anything to get my life back.

Gynae has put me on a 12-month wait list for a diagnostic laparoscopy which I just can’t do (not to mention he’s a general gynae and may not know what he’s looking for and likely won’t be able to operate due to it being on nerves) so I’m really hoping the Endo specialist can see how much of an impact it’s having on my life and do surgery quicker.

I’ll update on here what happens with the specialist.

Thank you for your advice and support. It means a lot 🥰💛

[EndoCoeliac_Woman in reply to Forest_Green]

I'm sure the endo specialist will be helpful, and if not, go to another one. Your pain is real, don't let anyone make you doubt that. And always reach out to us🥰

[Bk27]

hey, sorry to hear this i had my laparoscopy just under a week ago, my symptoms sound very similar and the surgeon found deep endo right on a nerve. He said it explained everything and preformed excision surgery. My doctors weren’t even convinced i had endo so definitely push for what you feel your body is telling you!! Hopefully you get some answers, best of luck lovely xx

[Forest_Green in reply to Bk27]

Did you have an Endo specialist do the operation on the nerves?

[Bk27 in reply to Forest_Green]

My surgery was performed in a bsge centre and as far as i know the surgeon was experienced with endo but this was all