I just found help and relief after 26 years of pain. I almost can't believe it. I could be looking at a pain free future. Is it possible?
If you are someone who suffers from pelvic pain and have seen doctors with out help. Don't give up. I worked at it saw hundreds of doctors, and suffered for many years with my amazing husband, and four great kids. It's been a tough road but we're seeing changes. Improvement....less pain and hopefully less drugs too. There is hope again.
Please tell me what is working!
The only thing that has helped that particular pain for me after suffering 24 years is botox injections in the pelvic floor muscles. My doctor requires physical therapy after as well to help you maintain the released state your muscles have found and retrain your brain and muscles. I am now 5 weeks post injection and the pain is gone for the first time in my adult life. it hass been since at least two weeks post. I don't know about immediately or the two weeks prior because you're not allowed to have any sexual activity for two weeks. Dr. Mia Swartz in issaquah WA is devoting her career to helping women with pelvic floor disorders. She works out of Athena women's health. It's just east of Seattle. check out her blog at miawartzmd.com.
She's a godsend. The first doctor who didn't just scratch her head
And say "hmmm that's strange, don't know what could cause it".
I continue with pelvic physical therapy and relaxation and hope that that I can this freedom continues, and I will continue to work on core instability and strengthening as well.
Great to finally hear a positive story on here! We need to hear many more like this, it gives us sufferers hope...
What were your symptoms/ diagnosis and what finally helped reduce or eliminate them?
My symptoms started small so many years ago. A sharp pain in the pelvic floor here or there especially after sitting on a hard surface. Then occasional intense pain during arousal. No need for intercourse. Could be just making out. It wasn't all the time then. I could tell it was when i was more tense or not so much "in the mood". Some pain upon deep penetration. Pain while sitting increased over time. Focused around the sitting bones and tailbone mostly. I had a diagnosis of endometriosis which to this day I'm unsure of. That doctor did two laparoscopic surgeries with laser "removal" to no avail. I tried hormonal therapies...nothing. Always the most intense pain was the arousal pain. I went to an endometriosis "specialist" in Oregon who biopsied abnormal tissue and declared I didn't have it. I sat home and cried my eyes out and researched yet again and found a diagnosis of pelvic congestion I was sure of. After contacting a doctor on the east coast(my ob/gyn didn't believe it existed) I was directed to the University of WA interventional radiologist who was hesitant to do the venogram but I made him. The diagnosis was right. Veins completely inactive pooling blood in the pelvis. He embolized (blocked off with glue and coils) so the blood would re -route. Some help in the daily pelvic pain that had gotten so bad in the 10 years since the journey started. But never touched the arousal pain. During much of this time many physical therapists for years and no help. After daily symptoms got worse again I basically diagnosed myself through research as having pudendal nerve entrapment and pelvic floor spasm. Traveled to San Fran Cisco to a doc who does injections around the nerve. First time, thought it had worked but didn't last. Painful intimacy again, all of the time. Traveled to him a number of times and he finally gave up and sent me to Phoenix to have surgery on the pudendal nerve which I did. Left side. It improved my ability to sit and daily pain but again never touched the arousal pain. Next, a year later (about 5 years ago) I had a hysterectomy in Phoenix with this doctor, Hibner. He was still throwing out guesses. Maybe the pain was still caused by congestion. The uterus drains blood into the rest of the pelvis before it goes back to the heart, let's remove the uterus. No help.
The one thing I knew was that I continued to have pelvic floor spasm. Occasionally my back would go out of wack too and then I couldn't urinate. .....Connection...of course. I found an amazing soft tissue specialist near home who has been treating me for years and slowly has rescued me from the back spasm. I'm not 100% in that area but improvement over the years. He also was able to manipulate the hip and pelvic muscles to calm them enough that the difficulty urinating improved. But no help with arousal pain yet. Now this whole journey has brought me here, 24ish years from the start and I once again researched. All these years botox was just beginning to be used in pelvic conditions but never by many doctors out there. It always made sense that it could calm muscles that are hypertoned or in spasm. Finally this time in my research a doctor near me is using it with some success. I got an appointment with Dr. Mia Swartz near Seattle WA and loved her immediately. It didn't baffle her like all the many others. She sat and talked with me for an hour and a half almost. We scheduled botox and now 5 weeks post procedure I have almost no arousal pain.....99.999% gone! I see a physical therapist to help retrain my brain and muscles to live in this happy place so I can maintain...required by Dr. Swartz and her medical plan. I will update in the future. Her hope is that you only need it once to help your painful muscles begin healing. Rarely has she injected someone a second time. I hope this lengthy history is not tedious but helpful. Let me know if I can help any more.Good luck and healing to you.
is this advertising for some kind of supplement?
Pain on arousal can also occur from the Bartholin glands not functioning properly sometimes
No advertising. You can read my story in response to Alyssa5
I'm glad that Botox has helped! I have had Botox twice to the pelvic floor and it did reduce some symptoms. Still working on the nerves that continue to be irritated.
Did you get it done with Weiss?
The other thing that has helped me is soft tissue manipulation. Different than massages and pt. But you can find a good pt who is educated in manipulation.
Did you see dr. Weiss in San Francisco?
I did, but not for the botox. I did the botox in Seattle with Dr. Mia Swartz. She uses an outpatient surgical center and anesthesia so she can use a full 100cc. It's too painful otherwise. Some people opt do it in office but she'll only use 50cc because they can barely get through the pain of it. It's the liquid going in that hurts not the injection. She injects near the tail bone I think on everyone and then based I your exam other muscles that are involved. I know Weiss just recently started doing botox in office because years ago when I was seeing him he wasn't.
Everyone mentions dr. Weiss which is about an hour drive from where I live. I had Botox done by my pelvic pain specialist in San Francisco (kaiser permanente in sf).
I couldn't say how you'd compare Weiss to who you've already seen. The thing I'd consider is do they just do it in office or under anesthesia where they can really get deep in the muscles...and use more botox..or liquid gold as we call it? Not cheap, and not covered by insurance. I know doctor Hibner in Phoenix will only do it under, or last I heard and my doc believes you can attack more that way too. I believe Weiss only does it in office. Don't know how many cc he can use that way. And I hear Painful!
I had mine done in the operating room (sleep) and I paid $100 dollars (copay). I had no pain in the injection site either just a little bruised. It is done rather quickly.. It takes longer to prep than the actual injections.
I'd say the same about the botox experience. I'm curious about other symptoms you are still struggling with that the botox didn't help and if we have more similarities in symptoms and treatments. The doc I saw for botox also mentioned that for her paitents that botox is not totally helpful for, she finds a sacral nerve stimulator (implant) can help. Especially if you are some one who struggles urinary issues such as emptying the bladder, stopping of the stream, to be really specific. She has found while helping those patients, it also relaxes the pelvic floor reducing pain. This would be my next step if needed. Also she swears by a good pelvic floor PT for post botox treatment. Are you seeing a PT?
I'm baffled by the $100 and copay...did insurance cover it? Most don't. They look at it as off label use since it's mainly (originally made for) used for cosmetic stuff. The places I've looked into and especially with anesthesia..... &thousands.
I've been thinking maybe it's worth a visit to Weiss since you are so close. I don't know how long you've been dealing with this but if it's been quite a problem keep going to new people, get new ideas. It is such complex stuff and many doctors and therapists are limited in their knowledge and repertoire. I can tell you from experience it's better to tackle it quickly because when you have pain long term the rest of your muscles and nerves start to react and over fire. I ended up with what some call Central Sensitivity Syndrome. Your central nervous system can start to over react and send pain signals throughout the body. About 10 years in I started experiencing and was diagnosed with fibromyalgia and chronic fatigue syndrome. So I'd encourage anyone to work fast. There is way more out there to help than when I started, but it's still a very complicated condition. A Multifaceted approach is encouraged: pelvic pain specialist, pain management, PT, uro+gyno, etc.
Link about the CSS in case anyone is interested.
Thank you for sharing. I'm glad to hear you are responding to the treatment. I'm not there yet (injections) but see them in the near future. Pelvic floor PT helps, but it's the ride there and home that hurts.
I feel for you. It sometimes makes you want to just curl up on bed and pull the covers over your head....and medicate! It's so hard. Hang in there. I hope you have a good PT that knows how to help.
I should add, make sure you have a good cushion to sit on. It can help take the stress off when sitting and encourage the right body posture.
I have no issues with my bladder; I am struggling with sensitive nerves all around the pelvis area (sacrum, butt cheeks, and thighs); when I sit or lay down my skin starts to burn. My doctor said it was neuropathy (nerves continue to fire despite the muscles not being overly tight). She prescribed me notriptyline last week but have noticed the difference yet. I feel almost normal while standing up (my skin aches) but I sit down those areas start to hurt.
Sounds like you've got much more going on than just the pelvic floor spasm. I have a lot of that too. Is it the nerves being compressed in the sacrum or the muscles? One of my big questions. So hard to figure these things out. All of my MRIs and scans come back normal. So I've been working on the other stuff. Much of it was helped for a time with PNE surgery but not enough. Soft tissue work has been the ticket for me. Have you worked with a soft tissue manipulation specialist? Not just a pt or massage therapist. There aren't many around. I happen to have one of the only, here in my home town, praise God, because he has helped me tremendously. Getting the muscles and all our soft tissue to loosen and respond to movement properly is a tricky thing. This guy, Eric Root, has people come from all over the country and I think the world. He helps Olympic bound athletes improve their performance by improving their soft tissue glide. It also releases and allows the nerves to glide better. He fixed a shoulder issue I'd had for years in 5 minutes and I didn't even mention it. Least of my worries, right? Have you had anyone work on nerve gliding? Some PTs do it. Important to find the right one. I've been through many. It's part of my PT plan now. Maybe some YouTube videos on it because you can do it yourself. Sorry I'm so chatty. I just have such a desire to help others now that I've found one of, maybe the last big piece, of my puzzle. Now I'm just trying to fit them all together.
I'm so sorry for you. It makes everyday life so hard doesn't it.
Shanellope...thanks so much for being willing to share your long road to recovery. It is so encouraging to hear of someone who has gotten total freedom from pain. Your lengthy history was not tedious at all but most informative and helpful I'm sure to many. I also agree with you about soft tissue manipulation being key to recovery Please keep us updated. Best wishes!
I have kaiser permanente insurance and they covered the Botox injections; my MRI came back clear too. I've been everywhere to get help, seen several doctors (not Weiss) in my insurance plan and they all agree that i have neuropathy pain in the pelvic area (not PN/pne); my nerves have become sensitive so when there is any pressure (sitting, laying down) the area starts hurting, later burning. Once I get up the area starts to feel better. The nerve pain is coming from my nervous system (central sensitization) and I need to learn to calm down my nervous system (easier said than done).
1 year and 4 months into this pain and I already have central sensitization... I was resistant to taking any medication at first but realized recently that it could help calm down my nervous system. My doctor did not want to give me meds at 6 months!!! I am looking into the body mind syndrome; this pain started 4 days after delivering my daughter via csection so it was a very a very stressful time (trauma).
I was resistant to drugs for a long time too. But I gave in when I started realizing that I wasn't really living. I was in bed much of the time because I couldn't deal with it. I began with amitriptyline and have progressed changed and now I am on Lyrica and Cymbalta. I believe they have helped with the all over body pain.
I insisted to get meds but my doctor was hesitant... She wanted me to try Botox first and continue to do physical therapy. Have been doing pt for months but this nerve pain has not improved. My muscles are not very tight anymore..
I had done PT for months maybe years on and off too work no results. Has your therapist ever done biofeedback on your muscles? Sometimes we can't tell that they're tight because it feels normal to us. My normal state was walking around with super tense pelvic muscles. I didn't know that for a long time, I just knew that they hurt. Biofeedback shows where your resting state is for your muscles. When I did it I realized I couldn't actually push them down to a relaxed state.
Also, everyone's anatomy is so different I've learned that your pudendal nerve can run through the piriformus muscle in a way that irritates it if it's slightly tight. That's something to have a therapist look at/work on too. Especially of you have burning pain in the glute area. The nerve could have trouble gliding as it needs to when you sit or squat.
Here is an interesting video that I like to listen to understand chronic pain;
m.youtube.com/watch?v=pgCfk...
Thanks for sharing. Good stuff. Makes so much sense.
I don't have much pain while I stand, I can run jump, exercise with no pain. Sitting is what causes my pain. My doctor described it like fibromyalgia or diabetic neuropathy (nerves are sending the wrong signal). Taking medication will give the central nervous system a break to hopefully break the pain cycle.
I had biofeedback done in the past too.
Sitting was always the worst for me too. Later on it become worse with more activity. Good luck finding something that works.
Shanellope, how are you now? My condition is so similar to yours. I had Botox injections in my pelvic floor surgically in the beginning of June, and I believe I'm going to have to schedule another round very soon because it seems the positive effects are wearing off. My urologist said it may take a few rounds every 3 months before i may find complete relief because my issues are that deep. I am still finding relief sitting (thankfully!! As long as I don't sit for hours on end!) but my good and bad day ratio is not as awesome as it was 2 weeks post-op.
I've read conflicting advice about this. Some people have said that the "first time" will last the longest and to stick it out as long as possible in between that first and second Botox treatment, otherwise you may end up in a lot of pain, or without any relief at all after the 2nd treatment. Other people have said it does take several rounds to retain these nerves and muscles to relax. My urologist has told me that I have so many tight spasms going on, that it may be simply impossible to get them all at once, so that could be what I'm dealing with. I've never felt completely 100% better, and I'm beginning to wonder if I ever will, or if I will need to undergo another round or two before I experience such things.
Interested in hearing your take now. Are you still finding relief?
Thanks for sharing your story!!
Kellerfly,
Thank you for sharing. I'm so glad to hear you've found some relief because as w all know, who have complex pelvic pain issues, that finding any relief is difficult. My current situation is similar. The great effects of the botox seem to be wearing off. I am not as bad off as I was pre botox but frustrated that the great improvement only lasted a few weeks. My doc is very big on PT and muscle relaxers to try to maintain the benefits so we are trying that to see where it gets me. Next step would be dry needling(like acupuncture) and potentially more botox. I'm trying so hard to work on the relaxing but those muscles just have such a long memory of stress and pain. Keep me posted on your condition and treatments. It is so helpful to hear about others experiences.
-Shanelle
Glad to hear I am not alone. I am on a vaginal course of Valium suppositories nightly, and went back to taking a dose during mid-day when necessary. I tried acupuncture when I awaited for the first round of Botox and did find some relief (full relief from migraines -- definite bonus!) so I will be going back for more acupuncture in the meantime for sure.
Solidarity!!
Kelli
Hi. I think I am so similar to you. After so many years of a tight holding pattern and the involuntary constant spasm, It looks like I'm going to have to go back for more botox. My doc is trying to tackle it with muscle relaxers to see if that brings them back down so increased my dosage of the valium suppository and has me another round of oral valium as well. The PT feels like the muscles haven't totally gone back to hyper tense but the pain is getting worse again. Glad to hear the acupuncture helped the migraines. Are you on other meds for fibro and the complex myofascial pain if you don't mind me asking. Since I was doing so well post botox I thought I'd start eliminating meds. Now I'm getting nervous. It's so complex it's hard to know what to do and what not to do to get improvement.
I haven't been put on many other fibro meds as of yet. Only Valium and only pain relievers like norco after outpatient surgery. Honestly -- they all feel like bandaids in comparison to what the Botox did. The Valium does help on some level -- but so does alcohol for that matter! HA!
Hoping my urologist can fit me in soon, rinse and repeat what she did the first time around. At least I know what to expect.
Hello, what complaints did you have and where did you go for diagnosis?
I do have already 9 years pain, pressure and urge all day and night. Consulted urologists and gynecologists and pelvic therapists without relief.
Thanks, Els 58
Shanellope93
My symptoms started small so many years ago. A sharp pain in the pelvic floor here or there especially after sitting on a hard surface. Then occasional intense pain during arousal. No need for intercourse. It wasn't all the time then, but had been for the past 13 years or so. Some pain upon deep penetration. Pain while sitting increased over time. Focused around the sitting bones and tailbone mostly. I had a diagnosis of endometriosis which to this day I'm unsure of. The laparoscopic surgeries with laser "removal" to no avail. I tried hormonal therapies...nothing. Always the most intense pain was the arousal pain. researched yet again and found a diagnosis of pelvic congestion I was sure of. After contacting a doctor I was directed to the University of WA interventional radiologist who was hesitant to do the venogram but I made him. The diagnosis was right. Veins completely inactive pooling blood in the pelvis. He embolized (blocked off with glue and coils) so the blood would re -route. Some help in the daily pelvic pain that had gotten so bad in the 10 years since the journey started. But never touched the arousal pain. During much of this time many physical therapists for years and no help. After daily symptoms got worse again diagnosed with pudendal nerve entrapment. Traveled to San Francisco to a doc who does injections around the nerve. First time, thought it had worked but didn't last. Painful intimacy again, all of the time. Traveled to him a number of times and he finally gave up and sent me to Phoenix to have surgery on the pudendal nerve which I did. Left side. It improved my ability to sit and daily pain but again never touched the arousal pain. Next, a year later (about 5 years ago) I had a hysterectomy in Phoenix with this doctor, Hibner. No help.
The one thing I knew was that I continued to have pelvic floor spasm. Occasionally my back would go out of wack too and then I couldn't urinate. Fibromyalgia became a huge problem. Chronic fatigue a big part of it all for many years.I found an amazing soft tissue specialist near home who has been treating me for years and slowly has rescued me from the back spasm. I'm not 100% in that area but improvement over the years. He also was able to manipulate the hip and pelvic muscles to calm them enough that the difficulty urinating improved. But no help with arousal pain yet. My med list is kind if long. All these years botox was just beginning to be used in pelvic conditions but not by many doctors out there. It always made sense that it could calm muscles that are hypertoned or in spasm. Finally this time in my research a doctor near me is using it with some success. I got an appointment with Dr. Mia Swartz near Seattle WA and loved her immediately. It didn't baffle her like all the many others. We scheduled botox and had almost no arousal pain.....99.999% gone! PT required, too....i felt better than I ever had. But unfortunately after 7 weeks the pain came back and almost as bad as it was. I'm working on the insurance company to cover the botox so I can go back for as many times as it will take to reset my muscles and keep them relaxed. Discouraged once again. But hoping botox will be in the cards again.
What did you have done to help with your pain?
I have severe spasm of the pelvic floor muscles, and the most relief has come from botox injections. The relief hasn't lasted more than two months, unfortunately, so my doc believes we need to address misalignment in the pelvis before another round. So now I'm seeing a new PT. Hopefully I can get aligned so my body doesn't keep pulling at the pelvic floor. Then maybe another injection to calm the spasm if needed.
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