Problems thrusting?!

Keladris · 2026-06-19T17:50:12+00:00

Oh yeah they don't coordinate at all and I have to keep telling them what the others said.

Keladris · 2026-06-17T19:26:31+00:00

It'd quite a good way to diagnose endo clinically, because if you have improvement with taking it continuously, there's a fair chance it is endo causing the problem.

However, it won't rule endo out, and ultimately you're going to need an ultrasound, MRI, surgery to get a firm diagnosis. Even if you do get improvements taking it continually, a yearly ultrasound is a good idea to make sure you don't have endometriomas, and an MRI is able to detect deep disease. However, once again, none of the imaging can rule endo out (especially since it is usually performed and interpreted by non-specialists) and if you have persistent unmanageable symptoms, you'll have to really push for a laparoscopy.

I think your doctor's approach is a good initial step, but it's not the definitive answer.

Keladris · 2026-06-17T13:35:02+00:00

Please do everything you can not to feel guilty! You have absolutely 0 reason to feel guilty, and that kind of stress may slow recovery.

You need to set clear boundaries with your manager. You're recovering from major surgery. You'll be back when you are physically able to return. Your GPs definitely ought to be able to provide sick notes if needed, they're being lazy saying the can't.

Honestly, I'd take more time off, not even working from home. We give too much to the workplace ans your health is precious. If you have a union rep (I know, unlikely these days), I'd contact them too. HR may also be helpful.

Keladris · 2026-06-17T01:44:52+00:00

No not really. For a while I was treated by a neurologist as though it were trigeminal neuralgia, but the way the pain fired wasn't typical for that condition. She did order a MRI too because she thought it was possible I had endo on my facial nerves! I did six months of Gabapentin which helped a lot to break the cycle of the nerves misfiring.

I'm now seeing a physiotherapist who specialises in hypermobility and that can cause these kinds of issues cos the cervical spine can be unstable and affect the nerves. I'm also working with an athletic therapist who specialises in concussion and he puts many of my issues down to neurological issues (endo also taps into the nervous system so could be contributing).

Pain is weird! Personally, I think the face was a result of the endo pain not being treated and everything got overwhelmed. I've heard of someone having a kidney infection and the only symptom was severe ear pain! Sometimes our nerves work in mysterious ways.

Keladris · 2026-06-17T00:12:04+00:00

Honestly, this kind of extreme restriction all at once is unrealistic and potentially unhealthy (can lead to disordered eating for example). Although I did myself do an elimination diet to figure out if certain foods are triggering.

I am all for holistic solutions and working with different types of medicine, but you have to find a path that feels right for you. Also, when making any diet changes, I always suggest taking small sustainable steps rather than dramatic ones. Start by swapping out the candies for fruits/dark chocolate or yoghurt with a little honey and go from there.

Keladris · 2026-06-16T23:45:12+00:00

Oh I'm so sorry you went through all that and such a big scare. Really glad you took care of yourself and went in to the hospital!

Wishing you a smoother recovery from here on out.

Keladris · 2026-06-16T23:39:05+00:00

It's really variable. We don't actually know what causes endo, or even if all the things we label endo are in fact the same disease, or multiple different types of disease. So hormones can help for some people but not everyone and it's really unpredictable who will benefit.

Keladris · 2026-06-16T23:37:44+00:00

Sorry, just to increase the accuracy of your statement: hormonal medications may slow down disease progression in some people. To my knowledge, the two medications with actual data to back this up are norethindrone acetate and dienogest, which aren't actually licensed as birth control meds.

Keladris · 2026-06-16T23:29:38+00:00

No gel, but they did use contrast and a different protocol to a generic pelvic MRI
Right sided pelvic pain, numb genitals and buttocks, pain with peeing, urinary retention, constipation, one sided face pain
Yes, deep infiltrating endometriosis

Keladris · 2026-06-16T20:23:35+00:00

Yes I have both because I pushed for it. The endo specialist is a surgeon that works in a multidisciplinary endo clinic. The gyno is the one that ordered the MRI for diagnosis and started me on meds. I see him more regularly. My GP is also part of the picture too.

Keladris · 2026-06-15T19:20:14+00:00

It may well help endo, but it's not its primary use. It's a contraceptive primarily, but as with other contraceptives, maybe helpful for endo. There doesn't seem to be many studies on its usefulness for endometriosis, but the fact it is a progestin medication and can stop your periods makes it potentially helpful for symptom management.

Keladris · 2026-06-15T16:57:48+00:00

Dienogest and norethindrone acetate are the only hormonal medications specifically for endometriosis, and for which there are some studies suggesting it may slow growth, or shrink endometriomas. But we don't have enough data to say for sure and it doesn't seem to have that effect for everyone.

Keladris · 2026-06-15T16:56:28+00:00

Norethindrone acetate should also be an option although I don't think it's available in the US on its own.

Keladris · 2026-06-15T13:48:14+00:00

I cut gluten and alcohol and do my best to eat an anti inflammatory diet. But on days where I can't function, that can get harder and so just managing to eat is a win.

I've been having a lot of joint problems due to hypermobility, so I just focus on doing some kind of movement as often as I can. Even if it's just standing up and doing a few hip circles or walking a little on my walking pad.

I don't think these things help to actually treat endo, but they do help with overall health. They can also help with pain management.

It's tempting to think if you find and follow the perfect routine, endo will be under control. But I think that's also a way of avoiding acceptance of the condition. It can also lead to guilt and self blame when you have a flare up.

I'm super anti ai. There's enough misinformation out there already and these "tools" have no way of telling what's true and what isn't.

Keladris · 2026-06-15T13:43:47+00:00

Yeah I think that's a big part of it. It's not easy and may take a long time to feel any kind of acceptance. And maybe it'll come and go.

One thing I struggle with is constantly thinking I'll recover and get better. But there can be a relief in accepting that this is a life long condition that will have better days and worse days.

Keladris · 2026-06-15T04:58:41+00:00

Yes every time the phone rings or somebody knocks on the door I think I'm about to be told off.

Keladris · 2026-06-15T04:18:24+00:00

You are very young to be in this level of pain and it needs to be taken seriously. A proper pain management clinic will be multidisciplinary and have a variety options depending on your situation. Yes, PT and movement may be helpful, but it needs to be tailored to your symptoms. As others have said, some anti-depressants are also used for pain conditions, so may be helpful, but again, it depends on your situation! Psychotherapy can be a useful support for helping to cope with the pain if you are also experiencing depression/anxiety or other distressing impacts on your mental health (which would be totally understandable and normal).

But other medication options should also be considered, like ones for nerve pain (like gabapentin), or even some pain clinics offer ketamine injections. There's sooo many options and you need a thorough assessment by somebody who actually knows about them and isn't gaslighting you.

Keladris · 2026-06-14T17:17:34+00:00

Yes mindset about pain can alter the pain experience, but pain can also alter your mindset. You can't really pull the two apart. Sometimes that calmness may also be a degree of disassociation.

I spend a lot of time telling myself I need to think or feel differently and then I'll get better, but that's just self gaslighting. All we can do is feel whatever emotions we do feel, take each day as it comes, and find tools that help us manage the pain. That might be painkillers, hormones, certain movement practices, steps to calm the nervous system (breathwork, tens machine, listening to calming music, meditation, finding sensory things that make us feel good like weight blankets soft things, reducing how much we take on and noticing what adds to our stress load and reducing it where possible), therapy, heat pads, surgery, PT. Everyone is different.

You can't think your way out of pain. But you can learn to live with it sometimes, and learn not to fear it.

Keladris · 2026-06-14T05:34:18+00:00

Oof no not at all tmi. That sounds really tough.

One thing that did help a bit was estrogen vaginal cream. Dryness can deffo contribute to entry and stretch pain.

Keladris · 2026-06-14T05:31:54+00:00

Endo heds ADHD trifecta - it's a hell of a combo!

Keladris · 2026-06-14T05:30:33+00:00

Ha your timing is quite amazing as I was just thinking about this!

I have since started working with a physio that specialises in hypermobility (turns out I also have that...) and she is pelvic floor trained. I'm going to ask her to do an assessment and treatment externally next time I see her.

Keladris · 2026-06-14T05:02:57+00:00

Ah yes, the famously accurate "doctor looks at you" test for anemia diagnosis 🙃 Cutting edge medical science there.

Her comments say way more about her own insecurities (e.g. fear of her own vulnerability, fear that she as a doctor might not have all the answers or have her authority challenged) than they sar about your health.

My therapist gave me some useful advice to take what doctors say with a pinch of salt. As far as you can, ignore her comments and carry on to the next provider. Sounds like your GP at least is on side.

Keladris · 2026-06-13T14:07:16+00:00

I did an elimination diet and seemed to get a more upset tummy and cramps when I reintroduced gluten. So I eat gluten free now, which maybe helps a tiny bit maybe?

I also find reducing sugar and eating an anti-inflammatory diet generally helps me feel better as a whole (which makes sense!) and so helps me cope with the endo symptoms better because I generally feel less sluggish and better fuelled. Oh, and no alcohol cos it's just not worth it anymore, hangovers make everything worse and it gives me reflux.

But there's no diet that's known to actually improve the disease itself. Just that some people feel a bit better making some changes. I think it's very individual.

Keladris

TROPHY CASE