Increased hope for pelvic pain in the USA

[PPSN_JudyB]

Hearing about more health professionals thinking outside the box in the USA. This is an example.

weill.cornell.edu/news/news...

[RLH356]

Great article...thanks for sharing it!

[Cardinal]

Thanks for the article. Actually, ironically, the doctor is thinking inside the box, but the key word in that is she's "thinking," which I'm sorry to say most doctors I have seen have not done. Almost every single doctor I have seen during my 8-year journey (approx. 20 or more doctors) seem to make it their goal to be in and out of the room as quick as possible. I have had to make all of my own diagnoses (and have done so very quickly and accurately); doctors were never able to diagnose anywhere close to accurately. Unfortunately, I can only do so much myself - I have been able to diagnose myself and research proper treatments, but I am unable to execute procedures on my body like give myself botox in my pelvic floor or trigger point injections. For that, one needs a doctor and they all seem to be just as bad at treating as they are at diagnosing. You would think that a doctor who lists trigger point injections as an area of expertise would actually know the basics of trigger point injections. Clueless. You would think that 2 of the most known names in pelvic pain would have done a botox procedure before. Or at least have researched this method! I have given up on doctors and I only see one to write my methadone prescription every month. My physical therapist has helped the most, but I still am in too much pain sit without methadone or work. I have even brought a good friend in to learn how to do internal muscle release on me through my rectum. I have literally been doing everything I can to get better and have spent a ridiculous amount of friends' money on healthcare, after exhausting my own savings. It is really sad, the state of women's health medicine. I should hope that the doctor would have identified that the pregnant lady's one-sided lower back pain was a sacroiliac issue - I identified it myself before reading about her doctor visit. And yes, she should wear an s.i. belt. This is basic stuff, and yet the reality is that I am quite amazed that this lady was actually given the proper diagnosis from the doctor, since this rarely happens.

[Pepper1977 in reply to Cardinal]

This is true. I live in Colorado and flew to Washington DC to see Dr Yousefi with the nerve bone and joint institute. She can actually see the nerves on her ultrasound machine. In office she's done platelet rich plasma injections on me and they worked, in the sacrococcygeal ligament. No one else could do this. So many are so far behind and only care to treat as many patients as they can. I had one tell me to take meds and "come back in 3 months" I didn't have 3 months, my abdominal area was burning everyday. Finally diagnosed correctly and had the ilioinguinal iliohypogastric and genitofemoral nerves resecuted, I'm better now. Unbelievable

[Alyssa5]

I myself have tried physical therapy and it was not the answer to my pain. Once the muscles were relaxed (with Botox and exercises) it was determined that my pain is coming from the central nervous system. At that point every doctor, physical therapist basically gave up on me and I felt so alone. I had to Be my own advocate and search for help. It is not easy doing all this and having chronic pelvic pain. when I would see a specialist they would tell me I see that you have been to 10 doctors already how could I help you? The medical system should be ashamed of themselves!

[Cardinal in reply to Alyssa5]

I've had a few doctors actually tell me that my pain is coming from my CNS, too. I was starting to believe them until one day, immediately following an internal PT session, my pain level fell to 0. I do think it's possible that my CNS is amplifying the pain, but there seems to be a perfect correlation of where/when I'll have a muscle spasm and my pain, so in my case, at least, there's definitely a real physical/tangible component.

I totally hear you about the seeing every doctor and his father. The thing is, we wouldn't have to see so many doctors, if the first one or two knew what they were doing. I even dated a few guys who were doctors (a couple of neurologists and an anesthesiologist and a general practitioner) and they didn't know how to help me either - and I even gave them the advantage of months/weeks of getting to know me and my pain issue. They didn't know any better than me. Doctors don't know much about pelvic pain at all.

[Alyssa5 in reply to Cardinal]

According to the psychologist at the chronic pain group that I attend stated that the central nervous system controls the muscle tension. I had this same question is it the muscles causing nerve pain or is it the nervous system causing the muscles to spasm and she said the nervous system was the culprit. This answer might change depending on what professional you ask..

[Cardinal in reply to Alyssa5]

Ah, thanks, Alyssa, that is very interesting to hear! I wonder if that is what is what causes my muscles to re-spasm after they've been released. If that is the case, I think it's going to be tough going.

[Alyssa5 in reply to Cardinal]

Our body is stuck on fight or flight and we need to learn to relax it.

[Cardinal in reply to Alyssa5]

I think you're right. I actually learned recently that I also likely have a condition called "dysautonomia," which means my autonomic nervous system is always in fight or flight. The only thing I've found that helps so far is Xanax, but that knocks me out, so I only use it sparingly.

[kalecolbe12 in reply to Cardinal]

Did you ever get better?

[Cardinal in reply to kalecolbe12]

I did get somewhat better - better enough to work full time, at least, which was my primary goal. My course of action was to double my dose a methadone and take the doses no more than 5 hours apart during the work day, and then once I'm home, I can lay down so dont need to take as much. I also use a special chair at work.

[kalecolbe12 in reply to Alyssa5]

So what is the course of action?nerve medication?

[Pepper1977 in reply to Alyssa5]

True true. I've had this happen.

[kalecolbe12 in reply to Alyssa5]

Once you were told it was central nervous system what was the course of action?

[Pinky2233]

Ironically, from a referral I see Dr. Bonder on Monday. Thanks for the article.

[littleonefr1 in reply to Pinky2233]

Tell us how you made out with the appointment! I went to that same hospital to a well known doctor but had no help at all! still in pain two years later!

[PPSN_JudyB Pelvic Pain Support Netwo]

That's a coincidence. Let us know how you get on and Good Luck

[SheRa13]

Dr. Dena Harris at SoHo ObGyn in NYC can do Botox treatments. She's excellent and hooked into the pelvic pain network. One of the few. When I first had pelvic pain problems it took me more than a year to find anyone who knew anything about this problem. My first gynecologist knew nothing about my problem and did no research. Dr. Harris is expensive but thorough. She and Dr. Coady (her former partner who wrote a book on pelvic pain, wonderful woman) helped to push to find an underlying cause for my problem. It turned out that I have an autoimmune disease in my spine. Made sense. The problem is under control and so much better--I thought it would never improve.

[kalecolbe12 in reply to SheRa13]

What is the auto immune disease and how did they find it?

[littleonefr1]

Here too, dealing for years with pelvic pain! I've gone to many doctors, including big names in the specialty who have not explained or addressed the issues I was having, over the years! I've been told I didn't look like I had anything! Lol how would you "see" pain? I was told it was "just me" or to take an ointment and go home, and this with travelling from far to get to the doctors... Spent countless amount of hours off from work (full time job) and money (incredible amount of out of pocket money that will never be recouped) for no result whatsoever.

I've researched for years online all causes for pelvic pain and solutions. Just like a writer was saying on here, there is so much we can do when we are NOT the doctor. What are we supposed to do when the doctor has no clue and won't refer us anywhere else?? Unreal to me and I have lost faith in doctors from this experience.

I'm seeing a Dr. now who seems to explain things and my issues in a clear and logical way.

Doing nerve blocks (lidocaine type) at the moment and trying to "dial down" the pain for now, via meds, relaxation and meditation. Not sure it this is the answer but thinking it has to help. I have been told about the fight or flight response by this Dr. It does make sense to me. Just hoping that the blocks and meds are not a blanket type of regimen given to women with the same pelvic pain. But then again, the brain signals the pain, so between blocks, meds for CNS and meditation/relaxation, pain levels should go down.

It's been so hard to have anyone do anything at all for my pelvic issues that I didn't even think were that complex or out of this world but apparently, many are clueless on the topic.

I just would like to see knowledge everywhere, so we/patients don't end up losing complete trust and faith in doctors over this. It makes it hard for me to trust any new doctor, it's so sad.

Hugs to all those who are suffering with pelvic pain and also from finding a supportive and effective doctor! Sorry for the long winded post

[kalecolbe12 in reply to littleonefr1]

I agree completely that should be pelvic pain centers in every major city that have an OBGYN a pain specialist a neurologist a physical therapist and an acupuncturist chiropractor..I can dream!!! I am actually trying to figure out a way to do this with my PT that way people wouldn't have to go to to all these doctors and all these procedures it's insanely ridiculous !!!!