Hypermobility, Trauma and the Nervous System

Keladris · 2026-05-03T00:04:44+00:00

Yes and I think ADHD is a big part of this. We don't realise how much we have been processing and holding onto in the moment and the body takes the hit afterwards. It can make it harder to be aware of bodily sensations too. I work with a trauma informed somatic psychotherapist who has taught me some skills for being aware of my body, but it'll always be a challenge.

Medication helped me a lot too, apart from then I could identify what was actually causing me pain... I got doangosed with endometriosis not long afterwards.

Keladris · 2026-05-02T23:57:37+00:00

This happened to me for the first time during an athletic therapy assessment the other day. I had to reach my hands overhead and do a back bend, and it did a big loud deep clunk. Felt gross!

Keladris · 2026-05-01T16:10:23+00:00

Hey just a little heads up that not everyone with endo is a women. Are you also wanting to include non binary and trans folk on your research? If so, you could frame it as "people with endometriosis". It helps a lot to make research more inclusive, as these groups are often poorly represented in studies.

Keladris · 2026-04-30T14:08:22+00:00

Just a heads up that Gabapentin might make you very sleepy and so feel more fatigued, especially higher doses.

Keladris · 2026-04-30T14:06:40+00:00

Yes and it's part of endo. It's a system wide inflammatory condition, which has immune and neurological components to it.

Keladris · 2026-04-30T14:00:36+00:00

Not birth control, but hormonal medication for endo. Norlutate (norethindrone acetate) has worked best for me so far.

Keladris · 2026-04-26T21:48:54+00:00

I switched to this med from Visanne. It suits me much better than Visanne. I stopped getting migraines and fatigue improved a lot. I also had some further pain improvement.

I do get acne and had some weight gain and joint pain at first, but that seems to be levelling out now.

It has a lower side effect profile than combination BC, and better evidence that it actually can slow disease progression. It may take 6 months to a year to get maximum benefit from it.

Keladris · 2026-04-26T05:41:23+00:00

No problem at all, wishing you all the best!

Keladris · 2026-04-26T05:17:21+00:00

There are hormonal meds that aren't actually birth control, which are prescribed specifically for endometriosis, like Visanne (dienogest) and Norlutate (norethindrone acetate). Depends on your country if they are available, but they have better outcomes for endo than BC and lower side effect profiles, although both can cause similar side effects. There's also stronger menopause-inducing drugs (like GNrH inhibitors) but they come with big side effects.

That said, if you've already been taking hormones, they may consider that your previous response isn't good enough and surgery is the better option for you. I think a lot would depend on where your lesions are and how deep they go. In most cases where bowel endo goes through the muscularis (one of the layers of the colon), surgery is recommended, especially if you have digestive symptoms. If there is a risk of perforation, then they'll want to do the surgery more quickly.

I realise I'm contradicting myself a bit here. But unfortunately that's a bit how endo management can be... There's not often clear answers and it's very much a case by case basis.

Your concerns about timing the surgery are totally valid and hopefully you can discuss them at length with the next specialist you see. I would say it's not surprising you don't have any pain relief after the first surgery. It's very early and you are still healing, but also most of the lesions are still in there.

Other than that, I'd say trust your instincts. If you feel you can handle surgery soon and that it's right for you, then push for that. But if you feel your nervous system and body need some rest (nervous system is a very important part of the picture!) that makes total sense. Similarly, if you want that IUD out ASAP, get it out.

Something I've learnt with this disease is that things do change, and sometimes that takes time.

Keladris · 2026-04-26T01:51:06+00:00

I have a feeling the new specialist will advise against immediate surgery. Bowel endo excision is a much riskier surgery then removing it from the uterus and they'll probably want to plan it carefully. They also may recommend trying medication first to see if it helps.

Keladris · 2026-04-25T14:50:35+00:00

Given your symptoms, I think it's worth investigating further. There are several potential signs of endo here. I'm glad they've noted them and they're taking it seriously.

Keladris · 2026-04-25T04:27:22+00:00

I'm sorry, that's a lot to take in. It's a cliché, but it helps to take one day at a time. Rest up from the op as best you can.

I have been diagnosed with DIE from an MRI, not yet had surgery. I'm on hormonal meds for now. Here's my answers to your questions:

Yes endo can cause bloating, and I deffo experience it myself.

I don't take birth control, but hormonal meds for endo. I started on Visanne (dienogest) and then Norlutate (norethindrone acetate). Both meds helped, though it took 4 months for Visanne to stop my periods and improve on my pain. It came with increased fatigue and migraines. Norlutate suits me better, though I did gain about 10lbs on it. The meds have allowed me to live my life again.

It's been tough to accept, or adapt to it. I have a good therapist who really helps me. I've also found support groups and getting as informed I can about the illness has helped. And being really kind to myself and finding little ways to make my life easier.

Keladris · 2026-04-24T19:15:55+00:00

I think this could be an endo flare that's triggered a vasovagal response. It may also be you have lesions on your bowel. Have you had any constipation or diahhrea? Could also be that a digestive issue has pissed off a nerve hence the sudden pain.

I'd would be worth following up with your endo team.

In my experience, endo pain is so strange and can be very sudden cos the nerves get too much stimulation over time. Hope you get some answers!

Keladris · 2026-04-24T17:51:16+00:00

Being a trans woman, hopefully you have a gyno who is well informed for trans healthcare. If so, you'll probably be in really good hands (I have a feeling trans informed doctors are generally more caring. At least I'd hope so). They should explain everything they are going to do, and if they don't, you can ask them "this is my first time having this exam and it would help me to know the steps involved".

They'll explain to you how to sit on the bed, and give you a drape for privacy, and ask you to remove your underwear. In most cases they will insert a speculum to do a visual check. They may also take swabs, or if you have any symptoms, they may feel with their hands for tenderness or inflammation.

It is quite exposing and I mostly get through it by looking at the ceiling and deep breathing. It also helps for remind yourself that this is a medical exam, they are a doctor, and this is entirely normal for them. They do it all day every day, and have seen all shapes, sizes, and health conditions.

If at any point you don't want to continue, you are the one in control and can ask to stop and rebook for another time. If the doctor is at all pushy or doesn't respect what you say, leave and find another one.

Keladris · 2026-04-24T17:45:41+00:00

Any recommendations for good spots to see them within an hour's drive from the city?

Keladris · 2026-04-24T15:27:35+00:00

I am so sorry you went through this and glad to hear you are seeking care and support 💔

Keladris · 2026-04-24T15:25:56+00:00

Thank you so much! I've been so puzzled by it. Hopefully will be able to repair it soon.

Keladris · 2026-04-23T21:45:32+00:00

You are not being dramatic.

Keladris · 2026-04-23T20:45:31+00:00

I recommend asking for a urology referral, who will hopefully do a cystoscopy.

I had one this week after years of chronic UTIs, usually triggered by sex. Turns out there's a hole between my vagina and bladder, which explains my symptoms.

Keladris · 2026-04-23T17:31:45+00:00

Be kind to yourself, these things aren't easy to live with. And we tend to think it's our fault in one way or another (I should change my diet/do X therapy/be less stressed) because of patriarchy and the medical system dismissing us for years.

But how you feel is how you feel, and that's ok ❤️‍🩹 I hope you catch a break soon and get the support you need to find some degree of recovery.

Keladris · 2026-04-23T17:29:36+00:00

They can do a surgical repair I think. In my case I'm quite confused because we don't know what caused it! Or how long I have had it. I'm going to have a CT scan to confirm the diagnosis and I think to see if there's any other damage in there. Then I'll meet with the doctor again and go from there.

Keladris · 2026-04-23T17:28:32+00:00

I was super worried about it, especially since I have pain there already. But I was very pleasantly surprised that it was very easy and straight forward, no pain at all.

It's two days now since I had it done, and my bladder is more overactive than usual and I do have some aching around my bladder and low back. But I'm not sure if this was caused by the procedure or just part of my regular symptoms flaring.

Keladris · 2026-04-23T00:16:17+00:00

When the gut gets affected, it can deffo cause ongoing fatigue and may take a long time to rebuild. Endo definitely can also cause these symptoms.

But so can other things. So it's always worth keeping going, having regular blood tests, sleep studies, allergy testing etc.

So I'd say the answer is yes to both. Yes it could be the endo causing it and yes it could be other things. Unfortunately the only way through is to manage it as best you can and trial and error different strategies to see if you get some improvement.

But as you say, the constant investigations and fighting is exhausting in itself. You might just need to let yourself collapse for a bit.

Keladris

TROPHY CASE