After my sixth laparoscopy for endometriosis, this time a hysterectomy to remove the adenomyosis and cyst-filled cervix, I was meant to go on a 4-5 week endometriosis rehabilitation course.
This would have included:
- Water aerobics
- Physiotherapy both in and out of water
- Pelvic and back strength classes
- Psychotherapy for pain management
- Psychotherapy to help with the inability to have children (this is a non-issue for me)
- Relaxation classes
- Pain management classes
- Dietary guidelines to help reduce endometriosis and pain
- Optimization of pain medications with an anesthesiologist
- Gynecological exam and medications for endometriosis
- Electro-therapy for pain management
- Balneotherapy (lots of baths with salts and herbs)
- Mud packs and mud baths
The schedule for this endometriosis rehab is a packed one – from 7am until 6pm you would run from appointment to appointment, Monday through to Saturday.
I was really looking forward to going, but unfortunately, the health insurers decided that I didn’t need it.
Instead, they recommended that I see a local psychotherapist, specializing in infertility and/or psychosomatic causes of pain. No idea why, because the lab results report I still have endometriosis after the operation, and I explained I really don’t want kids.
They also gave me a list of ‘pain specialists’, but most of them were orthopedic doctors. Pelvic soft tissue problems are not joint problems!
Building my own rehabilitation course
After a day of being crazily upset, and knowing these decisions here can’t be questioned, I set about building my own ‘rehab course’ with local doctors and therapists.
There are long waiting times, I will have to pay for a lot without insurance coverage, and it won’t be intensive, but I think I can cover most of the content of the endometriosis rehabilitation course.
Psychotherapy – PTSD counseling is more important and urgent for me, help for living with chronic pain would also be useful as I’ve never had psychological ‘treatment’ for that. Unfortunately, there’s a 6-7 month wait, and no English speaking doctor specializes in either of these areas.
Anesthesiology – This is a good choice for looking at my pain medications (my current low-dose codeine/paracetamol does not cover, so I just take nothing and not move around). I’ve found a specialist who also deals with fibromyalgia. They also offer electro-therapy, physiotherapy and massage. But it’s a 4 month wait.
Water aerobics – Joined a class in a warm water pool – there are only two warm pools in Leipzig. 2 month wait for the next class to start.
Gymnastik – This is the movement-oriented physiotherapy. Ideally, it would have been in the warm pool, but they have no openings for 6+ months. So, same facility, but on land – probably better for back/pelvis exercises anyway. Gathering forms, hopefully not a lot wait.
Physiotherapy – I already go once a week to keep my C2 neck/headache spinal problem in check. I think this will be bumped up to twice a week. This is more manual therapy than physiotherapy – a mixture of massage and stretching, no exercises.
Dietition – the health insurer offers ‘dietary classes’, but no one in this city knows anything specific about endometriosis. I’ll have to research this more online. It’s hard sifting out the nonsense from science-based information. A day or two to spend in PubMed.
Relaxation – Easy to do at home. I already meditate once a day as it helps with pain and do progressive relaxation as I fall asleep. Increasing meditation to twice a day and starting tai chi.
Balneotherapy – This is another easy one to do at home – baths with epsom salts or other good stuff. I think I’ll skip the mud baths though – too much cleaning up!
Massage – There are many massage therapists, but I suspect few have experience with reducing adhesions and improving mobility in the pelvis. Will need to ask around. ‘Twill be expensive as it’s not covered by insurance at all! Or I can try to train my partner …
Other additions to my endometriosis rehab team
Gynecologist – I’ve optimised my endometriosis medications already, and don’t want to do a fourth course of Zoladex/Lupron any time soon, so my gynecologist doesn’t have much to do.
Urologist – may need to be added to my rehab team, if the bladder pain from the hysterectomy doesn’t go away (it has gotten less in the last month).
Bowel specialist – And I should search for a bowel doctor, to look (again) into the cyclical bowel bleeding, that can only be endometriosis, even though it couldn’t be seen in the laparoscopy and colonoscopy.
So, that’s how I’m building my own rehabilitation course.
Have you been on a rehabilitation course?
What was it like? Could you design your own?
Have I missed something important in the one I’m designing?
Let me know in the comments below!