Endo: treatments, stories, support and research into Endometriosis
r/Endo
It wasn’t until my 40s for me. Many mental health therapists, Psychiatrists, doctors, spiritual teachers, everyone telling me that it’s just part of life - all of the things I was experiencing. That wanting to die most of the time was part of life. And I believed them. I believe that most people were struggling this much every day. But now I know it was undiagnosed PMDD, and also undiagnosed severe endometriosis hip pain.
But I was Gaslit for so long. I really believed them. I was so gullible and I’m so sad for that younger me who was desperately looking for help. I was so desperate I did whatever anyone told me – brain training, medications, psychiatric treatments galore, meditation, extreme exercise, 12 step recovery, decades of therapy, Physical Therapy, new jobs, new careers, hiding from society in my bed until I got my shit together, and so much more. I just did whatever anyone told me to.
I’m so sad for the younger woman I was who tried so extraordinarily hard, only for everyone to tell her over and over again that it was her own personal problem, and not a medical problem, and not a problem with a solution.
I had Endo removal surgery last year (MASSIVE reduction in my Butt/hip/peritoneal/sciatic pain), uterus removal 3 years ago, and I’m currently on Orlissa and it’s helping so much that I’m looking at ovary removal.
But how did I live so long thinking I was the problem? I’m just so sad about that. There were solutions all along – medical solutions. And I had asked all of the medical people for solutions, and none of them were offering any.
(I posted this on the r/PMDD sub but want to put it here too since the conditions have so much overlap for me. I think the physical pain causes a lot of the PMDD suffering.)
Hi, I posted this on r/obgyn and someone directed me to this sub. I'll post my original text, feel free to let me know what you think it could be.
I'm 21 years old and I've recently started experiencing pain when my boyfriend and I are having sex. I've been trying to get an appointment with a gynecologist for months now and it seems like every clinic is always booked. I'm going to try again tomorrow, but for now, I'd just like a bit of reassurance or information because it's stressing me out too much.
So my boyfriend and I have been together for a year and a half and before him, I had never been with anybody. I actually had pretty bad vaginismus until he eased me into it. I still struggle with tampons and I can't fit my own fingers inside or whatever, but with him, there's no issue. Though, in late February/early March, I suddenly started experiencing all types of weird pains when we're having sex. Sometimes, there's nothing and it's actually pleasurable. But most times, it's uncomfortable. It has completely killed my libido. I don't want to initiate anything because it might hurt and the pain stresses me out (I have hypochondriac tendencies), but I feel too bad if I always say no. I'm scared it'll push my boyfriend away. He's very supportive of me, but it has created tensions in our relationship.
Here's what the pain feels like and background information to describe the situation:
-Sometimes it feels like burning or tearing (more at the entrance/in the canal, not deeper) and the burning can last for a few minutes after penetration.
-Sometimes, it's a deeper pain that feels almost like a menstrual cramp
-Sometimes it feels like I have to pee, depending on the angle
-I've been on the LoLo pill for a year now and it's the only medication I take
-I don't have unusual cramps, bleeding, discharge, itching, or pain at all except when we're having sex. Even then, it's only pain. Never blood, discharge, or anything like that.
-It started happening when we were having rougher patches in our relationship, but as much as I'd like it to be an emotional/mental thing, I doubt it is
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What is Endometriosis?
Endometriosis: Endometriosis is a condition where tissue, similar to the endometrial tissue found in the uterus, develops as lesions outside of the uterus, typically on adjacent structures such as the ovaries, intestines, bladder and peritoneum. This tissue builds up and responds to the hormones produced by the body and it often results in pain and other symptoms. For a more in-depth description of endometriosis (or "endo"), please check out this article by the Center for Endometriosis Care.
We believe current research tells us that expert excision of lesions is the gold standard treatment for endometriosis and this often includes the use of hormones post surgery (though not always) - however, we also believe in supporting each other wherever we are on the journey to pain-free living and through whatever choices we make.
No one's disease is exactly the same, neither are treatment goals, access, or financial ability. We believe in providing a space where everyone can find the resources, support, and education to advocate for their own version of successful treatment and a pain-free life.
Resources
This is a Google Map of the doctors and clinics where members have found successful treatment. Message the mods for additions.
This is adapted from an old thread with some great discussions on laps, how to prep, and what recovery is like.
This is a private facebook group that has a lot of information, targeted towards patients in the US medical system. They have a list of doctors they recommend (please note that this is not a complete or exhaustive list of excision surgeons or other endometriosis specialists and has not been assessed for surgical skill). Please also be aware that this is not a support group and takes a strict tone with moderation that some may not like.
This is a link to another private Facebook group with a list of excision specialists. They also have some educational tools in the files section. They are a little less strict than Nancy's Nook.
UK accredited specialist endometriosis centres
This is a link to the British Society for Gynaecological Endoscopy website accredited specialist endometriosis centres page. The accredited centres have strict requirements that means they are experienced in complex excision surgeries and have endometriosis specialist nurses and pain management teams. UK residents can request referral to a centre by their GP.
Sometimes getting a doctor to take you seriously, either about your symptoms or about a treatment, can be challenging. A Pain or Symptom Journal can be a great tool to guide your discussions and to monitor your progress.
This document goes over how to talk with doctors, advocate for yourself, and when to seek out someone new.
Tests - Ruling Out Other Conditions
This document goes over conditions that doctors commonly want to rule out before considering more aggressive treatment when looking at an endo diagnosis. It should be noted, that it is absolutely possible to have endo and one of these other conditions.
r/Endo Rules
Dealing with other conditions?
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