I have been living in pain for nearly three years now. I have extreme lower back and pelvic pain. Additionally, it hurts down either side of my tailbone. I also experiences periods of nausea and don't have much of an appetite. My pelvic floor is constantly spasming which has made the muscles surrounding the area and my hamstrings tighten due to the pain. Plus, I have gained a lot of weight in my stomach, face and neck. Lastly, I've been having a lot of hair loss. My hair started falling out in clumps and now you can start to see bald spots. It's all very overwhelming.
I've seen several doctors and had many tests done. So far I have had a lower lumbar MRI, an MRI of my tailbone, X-Ray of my tailbone, several digestive system tests including two colonoscopies, ultrasound, scoped for endometriosis, injections into my tailbone and pudendal nerve, six injections of steroids into my levitar ani muscles, a Botox injection into my levitar ani muscles, pelvic floor physical therapy and water therapy.
The only thing that gave me any relief was the Botox injection. It stopped the pelvic floor spasms which gave my muscles some time to relax although, I still had all of my other symptoms. However, it's been 8 months and the injection has worn off. I almost hate to go get another injection because I feel like it's just masking part of the problem, not actually treating it.
I'm so sorry about your condition and all the suffering that you experience.
Some of your "other" symptoms indicate that you may have hypothyroidism.
Even if it may have been ruled out, the MAJORITY of cases go undiagnosed
or even worse MISDIAGNOSED due to flawed testing.
PLEASE do yourself a huge favor and do Dr Barnes Basal Temperature Test exactly as indicated online.
If you prefer, I have this info archived, so let me know and I can send it to you.
The weight gain and hair loss are classic symptoms of hypothyroidism and a few years ago I came across another sufferer on a different health forum who had the exactly the same condition and symptoms as you, including fatigue.
When I mentioned hypothyroidism, she did Free T3, Free T4 and reverse
T3 tests as I suggested and sure enough that was indeed her issue.
She went on natural desiccated thyroid and magically all her issues, simply vanished!
I don;t want to offer you false hopes, but I think it's worth a shot.
At least you will have ruled this possibility out.
Please let me know if you need any more details.
You need to stay strong to pursue this, so you can eventually get to the bottom of it and eventually resume your life.
And You're right, the botox injections are just a band-aid solution.
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