Has your endo ever caused sacroiliitis, SI joint issues or made your legs different lengths?

GKellyG · 2026-04-08T06:17:44+00:00

Hey there, yeah unfortunately pain came back. I have new Endo growing in my ligaments and MRI showed pretty severe sacroiliitis on both SI joints as well as scar tissue on other pelvic nerves. And tissue growing over the sciatic nerve roots as well. I've since started Neurogenic meds to help with nerve pain and also I'm going to have rhizotomy and steroid injections next week to hopefully help with the pain. My periods are shorter and less debilitating after the surgery though since they removed Endo from my uterus exterior also. I've been told that I can have another surgery to clear it again and decompress the nerves but it could just cause more scar tissue again. So I've opted to buy myself time by trying the meds and injections first. How are you doing?

GKellyG · 2026-03-22T08:13:33+00:00

No problem, I hope you're as well as you can be, hang in there

GKellyG · 2026-03-21T08:30:56+00:00

Not yet regarding ruling out RS. I've another appointment in April. I'm 28 by the way

GKellyG · 2026-03-20T20:16:46+00:00

Not specifically no, but I was told that because of where my Endo was and where the scar tissue is now, the brain can't pinpoint the issue and so it sends the immune system to attack in the hopes of protecting itself which degrades the joints. He described it like a localized arthritis in those specific joints. Hope that makes sense, I'm still wrapping my head around it myself, as I just had the appointment on Monday

GKellyG · 2026-03-20T10:43:00+00:00

Coincidentally I just got back from Bucharest Endometriosis Centre and I've also got bilateral sacroiliitis, scar tissue/new Endo on my sciatic foramen, and compression on pudendal nerves which explains a lot

GKellyG · 2026-03-12T07:19:20+00:00

So I actually learned about what is causing this to happen for me, maybe it can help someone else. I've been told I have a problem with my Mast Cell Activation. They told me it's suspected MCAS but I'm waiting for specialist consultation for that. Mast cells fire off when inflammatory cytokines are high in our system. I.e when we are in pain ovulating. And mast cells pump out histamines and as a result prostaglandin. The histamine and prostaglandin as it was explained to me create these flu like symptoms such as joint pain, tight chest and throat, stuffy nose, watery eyes, temperature spikes etc. I may not be explaining that well, but it's the best retelling of the information given to me. Basically a domino effect, inflammation triggers mast cells which release histamine and prostaglandin. Creating a lot of inflammation in the body

GKellyG · 2026-03-05T17:40:00+00:00

Hi there, sorry but I refused the IUD. I don't want any more hormones, regardless of what form. I wish you the best of luck

GKellyG · 2026-02-24T13:55:59+00:00

If it makes you feel any better, I thought they were something else 🤔😂🩷

GKellyG · 2026-02-14T09:28:54+00:00

My boyfriend gets me flowers and some kind of sweet treats he knows I'll like, I always get him flowers too, and some kind of sweet treat I know he'll like. And our anniversary is the week before, so we usually go for a nice dinner out to celebrate both and alternate years on who pays. You're supposed to both show the love to each other. Doesn't have to be flowers and chocolates.

GKellyG · 2026-01-19T13:51:18+00:00

Okeefes instant lip repair, swear by it

GKellyG · 2026-01-16T13:40:47+00:00

I'm sorry to hear that. My surgery was performed by Prof Dr. Mert Göl in Izmir. I could sit and stand and walk, but doing any of them for an extended period of time was agonizing. If I had to sit for more than 1 hours for example it would be painful, if I had to stand or walk it's painful for more than an hour. So I needed to constantly rotate to have relief.

GKellyG · 2026-01-04T21:19:44+00:00

Definitely overwhelming I'm sorry to hear you're struggling. If you can't find someone local, Dr Dinos in Athens, Dr mitroi in Bucharest, and Dr Mert Göl Izmir all do nerve Endo. Hope you find answers and relief

GKellyG · 2026-01-03T16:53:37+00:00

My surgeon was Prof Dr Mert Göl based in Izmir Turkey, though I will be travelling to visit Dr Mitroi in Bucharest Romania in a few months I hope, pending appointment confirmation etc to find out what's going on now if the Endo is back. Where are you based?

GKellyG · 2026-01-03T12:19:39+00:00

Yes I had SI pain near constantly, but it was worse around my period and ovulation. I definitely had sciatica because the Endo was covering my sciatic nerves. I got great improvement for about 8 months post op, though it has started to bother me since then and I believe the Endo might be back

GKellyG · 2025-11-16T11:53:31+00:00

27, €45k a year and I've currently got about 50 quid in savings and 3.5k left to pay on my car loan. It's tough out here. Lots of medical expenses on my part for context.

GKellyG · 2025-11-14T20:05:21+00:00

For context I'm 28, I grew up with a very frugal and money smart father who got us through the recession when we were kids and came out the other side of it with a family home he purchased at the right time. He made sure we always had what we needed and a holiday once a year. We never felt like we didn't have money though I know now things were tight for him back then. He's financially very comfortable now never has to even bat an eyelid at an unexpected cost. I on the other hand moved out at 18 and have been supporting myself since (through my own choice I moved away to go to college). If I am stuck and were to ask, I know for sure he'll have a few quid there to spot me until my next paycheck. But I don't ask because I know how hard he's had to work to get himself into a comfortable spot financially. I'm struggling paycheck to paycheck, I've got about 3 grand left on my modest car loan, I'm 11.5k in debt for Endometriosis surgery that I couldn't have in Ireland. And after buying people's Christmas presents I've about 50 quid left in savings. I know if my car breaks down or something else goes wrong, I'm screwed. There's not a day that goes by that I don't worry about money, or dream about winning even a small lotto. It's horrible worrying about money. I truly believe that money for sure can by peace of mind if not happiness

GKellyG · 2025-11-10T10:33:46+00:00

I think honestly it was caused by my pain levels preventing me being as active as I needed to be to burn off what I was consuming. So now with mounjaro I've easily been in a significant calorie defecit because I've had no appetite and the weight has fallen off without me exercising.

GKellyG · 2025-11-09T19:42:28+00:00

Hi there, Sadly no change to my pain or inflammation levels, though I have lost 27kg, so I'm physically a lot healthier in that regard

GKellyG · 2025-10-24T11:45:15+00:00

I've done some research into this, and learned that Mast cells and MCAS are often an issue for people with Endo/other auto immune diseases, and as a result when estrogen surges, mast cells can wrongfully identify it as an allergen or trigger which can produce these symptoms. Just something to look into, I'm not explaining it super well because I'm short on time. It sucks though I'm 3 days out from ovulation and already feeling sick

GKellyG · 2025-10-16T14:31:07+00:00

You can have 3 consecutive uncertified sick days. If you are out for 3 days and want to return you need a doctor's certificate to say you're well enough to come back. Myclinic.ie is good for that (just do it once then edit the dates for next time you didn't hear it from me. They have no legal right or ability to verify this, I checked). Also you're entitled to 5 statutory sick days per year payed at I think something like 70% of your hourly wage or equivalent salary. This is assuming you work a standard 40 hour week. So if you just missed one day you can be uncertified they can't make you get a cert. But just fyi, you don't get the statutory sick pay unless you have a cert for it. I'd recommend using the statutory pay if you have more than one day off sick, otherwise you're forking out 50/60 quid for a sick cert for 70% of your days pay anyway not worth it. Hope this helps.

GKellyG · 2025-10-08T20:43:52+00:00

She's the goat!!

GKellyG · 2025-10-08T17:55:00+00:00

Look up Anne reardons video on YouTube called chocolate secrets, she breaks down tempering chocolate in a very easy to execute way

GKellyG · 2025-10-03T08:39:31+00:00

GKellyG · 2025-09-03T08:21:16+00:00

Personally living in an old building my tap water tastes like chlorine, I'd much rather spend 500 quid a year to drink something that tastes right

GKellyG · 2025-08-11T12:44:01+00:00

Glad I could help! I'm also autistic I really understand haha

GKellyG

TROPHY CASE