I have posted before about suffering from very tight pelvic floor muscles and hip flexors, which are somehow connected. It has kept me from being able to walk very far without having terrible pain, meaning I can walk around the house and go to my doctor appointments like nothing is wrong, and the pain varies.
But as I mentioned before, I can't walk at our large movie theater, the grocery store, hospital, etc. , without being pushed in a wheelchair, even though I'm capable of walking. I've seen a bunch of doctors and PTs and taken a lot of meds with a lot of side effects.
This morning, I'm being put under and getting botox injections in my pelvic floor. It's being done in the operating room because of the anesthesia, and in case of complications like bleeding or the injections being put into the wrong place, like another organ. (I swear this is what she told me!) If the botox spreads too far, I could be incontinent for three months. And, it may not work. Since I don't have any other options, I'm going ahead with it. Prayers and positive thoughts for a good outcome would be very much appreciated. Thank you! ❤️
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CatsandCars
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Hi CatsandCars, keeping good thoughts for you and hoping for positive results from your procedure. Keep us posted on how everything went. Sending a hug...🤗
Everything went well today except my right leg is numb/weak because the doctor used a nerve block that was close to the sciatic nerve, just to help with the pain from the botox injections. This has happened before (from a nerve blocks; I haven't had botox for this before) and should wear off by tomorrow, and until then I'm so glad I have my hubby to hold me up when I need to get out of my chair for anything! ❤️
Now I wait and see as the botox kicks in over the next week or two. 🤞 Thanks for your support and prayers! 😊
My Urologist wants to do Botox injections in my bladder as I have a lot of incontinence problems. She said if it went wrong I would have to Cath my self to be able to pee for 4-6 months No way not gonna happen I'll live in the diapers before I will let anyone shoot known poisen in to me!
I don't mean to be nasty about botox injections for some people it is a necessary thing & more power to you but for me it scares me to death to think of being poisoned willfully.
I don't even eat questionable items that may have been in the fridge too long, so I'm not generally a risk taker. But I just think of it as medicine. It's purified, so it's not like they're injecting me with rotten stuff from a dented can. 😂
Sure, it's a toxin produced by bacteria, but in small amounts in the hands if a skilled doctor it's very helpful. I've been getting botox injections in my neck muscles for years because they're painfully tight, and knock on wood, I haven't had a problem yet. Mold is gross, but it gave us penicillin. Most of the drugs we take every day are toxic in large doses. To me, botox isn't that different.
I totally get it if you're not comfortable with the risks, but it does work for a lot of people. Of course, I would probably be singing a different tune if it had gone wrong, and I really don't have any other options.
I know, it does sound scary, and I don't know if I would even know if that had happened at this point. I'm actually trying not to think about that part too much. It reminds me a lot of reading the side effects and potential adverse reactions for Ocrevus or other MS drugs, and then going on them anyway. 😅
You definitely have to have confidence in the doctor. Everything depends on them injecting the right place and using the right amount. My walking difficulty stems from tight pelvic floor muscles and tight hip flexors. The idea is that if the pelvic pain can be improved, I could tolerate PT to hopefully stretch the hip flexors. Then I could hopefully walk without pain.
Thanks, Mrsmike9, I appreciate that. I don't really think it's any braver than taking most DMTs. The side effects/adverse reactions are scary, but rare. So you hope the numbers work for you and you're not one of the unlucky ones, I guess. 🤷♀️
It sounds like your spasticity is much worse than mine. I am currently trying suppositories with CBD and .3 % TCH. It has definitely relaxed me and will probably help me sleep but it hasn’t gotten rid of the clitoral pain. It seems to have subdued it a little. I tried vaginal Valium but it made me too tired to function. I keep it on hand in case the pain is unbearable. I take Pregabalin at night. If I take it during the day it makes me too tired. All of these medications reduce the pain but don’t remove it. I am going through perimenopause and have discussed using HRT patch with my doctor. Have you been through menopause? If so, did you use HRT? Did it help at all with spasticity? I will continue with PFPT and regular PT and hope for a breakthrough. I have had PF spasticity for about 25 years. My PCP, GYN, and neurologist were completely unhelpful for years. I was sent to therapist for depression (which was helpful in many ways) but this didn’t make the pain go away, obviously. My poor husband suffered through an almost completely sexless marriage for 15 years. We went to couples therapy. He thought I didn’t find him attractive. Some things came out in therapy that were more damaging than helpful. I thought we might separate. It sent me on another desperate internet search for a solution and I finally found a Sexual Wellness Doctor in 2017. She was the first doctor to prescribe PFPT for me. Then she suggested my husband and I see a sex therapist. The PFPT helped with the pain and the sex therapist helped us with our hangups and fears and we had a very fulfilling sex life until last year when this clitoral pain started. Again, GYN and neurologist were unhelpful. I am seeing the Sexual Wellness Doctor again and she and the physical therapist have been so much more helpful.
I am so hopeful that the Botox helps you and you are able to walk without pain. God bless you and thank you so much for sharing your experience!
It sounds like you have had a terrible time, RomCom87. Unfortunately, pelvic pain is just barely beginning to be understood. I wish I had gone to PFPT much sooner, but I could still be in the same boat, for all I know. The side effects of these meds for pain (Lyrica, gabapentin, elavil, etc.) are really terrible, especially considering that they aren't very effective for most people with pelvic pain. The NHS in the UK has determined that gabapentin doesn't work for chronic pelvic pain and won't use it anymore, although I don't know that they have anything effective to use. I do think they can help in the case of neuropathy, though. I wonder if your issues might come from the pudendal nerve.
I am 58, so way past menopause, which makes PFT and intimacy challenging. Any form of estrogen seems to make my pain worse, even cream, which is incredibly frustrating because I could really use it. It also doesn't make any sense to me. My PC was so sympathetic and sent me to a PFPT who wasn't able to help me. He really tried to find me a doctor to do pelvic floor botox. He sent me to a urologist who used botox for incontinence, who was puzzled about me being there but suggested a physiatrist. I put a lot of hope into the physiatrist, but when I finally got an appointment he just told me to use gabapentin, which literally made me cry. My pain doctor gave me hydrocodone for the hip/pelvic pain and tight neck muscles with the intention of taking me off of it when I got the baclofen pump, but it turned out that it can't be turned up very high or my legs get so weak it's hard to walk. When this all started with the walking, which I think was basically yanking on the spastic muscles. I was in agony, and hydrocondone absolutely worked, along with 60 mg of baclofen a day. I was incredibly out of it, but I don't know what I would have done without it. I stopped driving and have not been able to get back to it, which I hate, even though I'm managing on far less medication since I stopped walking. I've developed a tolerance to the hydrocodone and it doesn't work as well anymore. I wish I could get off of it just so I could go back on and have it work again. My doc won't give me a higher dose because apparently you become tolerant to it pain wise, but not as far as your respiration. So more would kill the pain, but it might make me stop breathing, especially combined with clonazepam and baclofen. Opioids are such taboo, and they really do have their problems, but there are so many people suffering from severe pelvic pain who could have a better quality of life with them. I've never had a desire to use more than I'm supposed to or to use them for anything other than pain. I am glad that the CBD/THC suppositories are helping you, but I wish more could be done to help you.
My gynecologist was the one who finally referred me to a urogynecologist and a better PFPT, but I just couldn't tolerate the exercises, so the urogynecologist set me up for the pelvic floor botox.
I've never heard of a sexual wellness doctor. That's an interesting concept. I'm so glad you found someone to help you, and that she was able to refer you to physical therapy. It sounds like the sex therapist was very helpful, as well. I'm so sorry that the new pain has affected your sex life after you did so much work to save it.
I'm very sorry that marriage counseling was counterproductive for you and your husband, as well. I'm so glad that your marriage survived. MS can be very hard on a marriage. I know that my husband is really supportive, loving, solid, and dependable, but he has times when he's really MS-ed out. He has no problem driving me to all my appointments and doing most of the work around the house, but he gets really tired of me talking about pain and symptoms and medication. It was hard to hear that, although I really believe that he cares about how I'm feeling. I think it just makes him feel helpless, so I have to make an effort not to overdo it with the sharing, but then I feel rather alone. I do see a therapist myself. I've thought about couples therapy, and I've mentioned it to him, but it wasn't met with much enthusiasm. Honestly, I haven't pressed the issue because I'm afraid to go there. Maybe I'm better off just counting my many blessings and doing my best to make sure he knows how much he means to me.
God bless you, too. I'm sorry you have had such a hard time, but I feel less alone after hearing about your experiences. It's not the easiest kind of thing to share on a public forum, but I am glad you did. I will absolutely let everyone know how the injections work. I wish you the best and hope that you can find someone to help you.
I stay behind on here, & you posted this 12 days ago. Did the botox kick in? I hope you have had good results. Would you recommend it? Have you seen any improvements? I did not know this was a thing.
Unfortunately, I can't tell if it's working yet or not. I do seem to be able to go much longer into the day before having to take meds, but the pain is definitely still there.
Botox injections are considered off label, but they do work for some people. It's hard to get insurance companies to pay for it, though.
If you're interested, you need to find a urogynecologist and ask if they do them. I had to go through other treatments like local anesthetic nerve blocks/injections and physical therapy and fail at that before they would consider the botox injections.
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Update on MS incontinentence, and finding bladder control with botox.
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To inject or not to inject? That is the question!!!
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Pinch With Injection?
