Please Help....What do you think about pelvic floor steroid injections?

[teddyjoness]

I am brand new here, and I need to make a decision in the next few days about whether or not to get pelvic floor steroid injections because I have an upcoming. My urogynecologist said that she wants to do the injections to calm the pelvic floor down so that I can better tolerate PT. I sought a second opinion, and that urogynecologist said that the steroid injections are not evidence-based. He recommended botox injections instead. I sought out a physical therapist who said that the injections could cure me completely, or they could make my condition worse...permanently. She said that the results vary widely from person to person, and there is no way to predict the outcome. She said that it will take more than a month or two, but she thinks she can significantly improve my pain symptoms with management. She also mentioned valium suppositories. I have improved so much since I scheduled the injections, and I am so afraid of doing anything to make my situation worse....whether it be PT or injections. Any help or insight is most appreciated.

[Hidden]

What a dilemma, teddy. You say you’ve improved a lot, do you know why? What have you been diagnosed with? All I can say is that if I were in your shoes, I would hold off doing anything since you’re feeling better than you were and maybe consider PT as long as the therapist is very cautious in her approach. However I am sure some more knowledgeable people who have had various procedures will be able to give you more of an insight.

[teddyjoness in reply to Hidden]

Thanks for responding so quickly. I have been diagnosed with pelvic pain that they believe resulted from over stretching with dilators from physical therapy for narrowing of the vagina and minimal leakage upon sneezing and coughing. This attempt at greater wellness created a whole new set of problems. It appears that I am having the pain, tenderness, and muscle spasms in my piriforms and obturator Internus muscles. They believe that the PN is also involved. I have improved because I am retired, so I was able to put myself on bedrest, which gives me relief. I am able to lie on the couch and in bed for most of the time instead of sitting and standing, which aggravates the pelvic pain and seems to cause back and neck pain along with positional headaches upon sitting and standing. So perhaps I haven't really improved, but the resting has masked the symptoms? I am very anxious and am starting to slip into a deep depression because of this drastic change in lifestyle. No one understands, and my family doctor says that she can't advise me because in her 10 years of practice, she has never had a patient with this problem. I am a 57 year-old female, and I can't lie in bed the rest of my life. Thanks for your insight, support, and kind words!

[Hidden in reply to teddyjoness]

Teddy, I am so sorry 😥 I’m in exactly the same position as you except I had a severe reaction to prescription pain meds earlier this year as well. This caused a myriad of terrible side effects. I was broken physically and mentally. I wanted to die. I believe my body was shutting down. I’ve been fighting every day. My GP’s experience of PN is non existent. I feel all alone except for the lovely people on here of course. Please feel free to PM me if it’d help x

[teddyjoness in reply to Hidden]

Maybe you could message me first? I can't seem to get the message button to work.

[Fourweddings in reply to teddyjoness]

Hello Teddy, I’m so sorry this is so hard. Have you consulted with a cranial osteopath/ osteopath? Or an acupuncturist? I have vulval/ vaginal pain and was told by one gynaecologist it was due to levator muscle spasm in the pelvic floor. Prescribed Amytryptiline 25mg for six weeks and told that if that didn’t work she would give me Botox. I didn’t want to take Amytriptiline as I was given it years ago for vestibulitis 15 years ago and I didn’t like the effects so I sought out acupuncture then as recommended by the vulval pain society and it really helped. So I’ve been seeing an acupuncturist now who is top notch and a qualified consultant when practicing in Beijing. This helps a bit. Also seen a top notch cranial osteopath who has worked out all sorts of pelvic problems including that my slight scoliosis is the result of a fall 20 years ago, that some of my pelvic pain is aggravated by an operation on my septum in my nose (!) etcetc. This also helps. I could not recommend enough hat you see an osteopath. Also saw a second Uro-gynaecologist who said I had some but not much pelvic floor tightness and instead prescribed vagifem tablets for oestrogen and atrophy. This helps a bit too. He said that Botox is experimental and unproven and suggested physical therapy. The PT found pain in the area of episiotomy scar and a cyst so this also causes pain. Of everything I’ve tried I would recommend finding the most experienced cranial osteopath possible and the most qualified acupuncturist and trying those. Also how about seeing someone like professor Wendy Reid at Royal Free. Ignore anyone who downplays/ tries to ignore your symptoms. It is demoralising enough. You will get there. I’ve had to work everything out for myself.

[teddyjoness in reply to Fourweddings]

Thank you, Fourweddings! I have not consulted with an osteopath yet, but I really like that idea. A retired osteopath just suggested that very same thing to me, but I live in the US and will have to find out an osteopath who does manual manipulation. So many of them just don't do that these days. My father was an osteopath, and he helped so many people. I don't know what a cranial osteopath is or how to find one in the US. Can you tell me more about that they are, what they did for you, and how you found one? I also really like the idea of acupuncture. I tried it a few years ago for anxiety, and it quelled the anxiety for weeks. Thanks for the great suggestions!

[Fourweddings in reply to teddyjoness]

That’s very interesting that your father was an osteopath Teddy. My osteopath is very gentle and does not do any “crunching” but works on all the fluids and connective tissues and is realigning my pelvis in a very gentle way. I just googled and found the cranialacademy.org in the USA which might be helpful? With the acupuncture she works on my sacrum and the nerves going town to the pelvis and I can feel the sensations during the treatment in my problem area. Hope that helps.

[sushke]

My instant response was the same as Ruby_16. As you feel you have improved, I would hold-off and see how things progress, or not, as the case may be. If you feel the situation is improving, even if it is slowly, I would personally rather wait. You can't lose anything by it and you may find yourself in a better place without injections.

Wishing you all the best.

[lucyp in reply to sushke]

Hi,

I have had Botox several times it lasts several weeks if effective it does wear off, I have never heard of anyone being left worse permanently but there may be. Difficult call as lying around in bed is no quality of life. Have. You discussed your concerns with the professional who would be performing this? They may be better informed, sorry feel I,m sitting on the fence but we are all so different.

Regards lucy

[teddyjoness in reply to lucyp]

Thanks, Lucy. I have definitely lost my quality of life. I was hoping to enjoy retirement! I have not discussed my concerns with the doctor because she has given me the option, but she says it's the last thing she has to offer me. I haven't had the chance to tell her that I have improved. I do just wish that I could have a conversation with her about this before the appointment date. She is the one offering the steroid injections.

[teddyjoness in reply to sushke]

Thank you so much for your feedback and your well wishes. It means a lot to me that people are reaching out.

[clancemandoo]

Whenever I improved before going through with a procedure and then having it done anyway figuring it would make me even better things always got worse, sometimes way worse so my advice is to proceed with caution. I did have luck with my first botox injection but after the initial one they stopped working and none of them made me worse.

[teddyjoness in reply to clancemandoo]

Thanks so much, clancemandoo. I think that proceeding with caution is wise. I appreciate your sharing your experience in an attempt to help me!

[HC99]

Hi fourweddings I am very interested in your comment about acupuncture. I also read on the vulval pain society about acupuncture but have had no luck finding a practitioner who will treat pelvic floor pain. The 1 I have used for many years for fatigue will not treat specific pain sites like this. I am trying to find someone in the Yorkshire area near Leeds if poss. Any help? Hi

[Cardinal]

I feel like you shouldn't have the procedure until you're more comfortable with the thought of it. Otherwise, being mentally uncomfortable and anxious from it could affect matters. If, later, you stop improving and really need an option then you can try the steroid injections. It sounds like a pudendal nerve block to me, and I've heard mixed things. Personally, I didnt get it done. Also, incidentally, I didnt start getting better until I got out of bedrest. I thought bedrest would help (and also gave me an excuse to just relax and watch netflix), but it absolutely made me worse. Once I went back to work, and pushed through an initial couple months of pain, I noticed that I would consistently feel better Tues - Friday, but would be in pain throughout Mondays after a weekend of lying in bed relaxing. I'll likely never be completely better, but I'm maybe about 30% better. Internal PT helped, also getting my pelvis into alignment, and making lifestyle changes like my chair and body pillow. I still need to take a heavy pain med and not sure if I'll ever be able to go without it.

[teddyjoness in reply to Cardinal]

Cardinal, Thanks for much for taking the time to answer me. I agree that I am not mentally comfortable enough with the whole idea of the procedure. Your comments about bedrest also give me something to think about. I am going to keep a log of how I feel when I am active vs. how I feel when I lay around. I am just so afraid of disturbing something, but this is certainly no way to live. How did you get your pelvis into alignment (what kind of doctor)? What kind of chair and body pillow did you get? I shopped for a recliner the other day and couldn't decide if I thought it would be helpful or not. Do you mean a recliner or a chair for work?

[Cardinal in reply to teddyjoness]

A chair for work. But also have one for home. The aeron chair. The body pillow is one of those pregnancy pillows (the very large U-shaped ones). The same PT who does internal therapy should be able to see if your pelvic bones are in alignment and help you with moves if they are not.

[Whangareinik]

Hi I would love to be able to help, I am a Pudendal Nerve Damage sufferer since treatment injury during a hysterectomy. I have had so many nerve blocks and honestly, the pain is only reduced during the procedure whilst I am numb then it gradually returns. I now have pain in my coccyx when I sit down which is a new addition to my problem, if you are having doubts, maybe hold off. I take Valium 1mg as needed up to 4 daily, this is the only reprieve I get so I would hop on to that information, it maybe helpful for you. Sending you best wishes, it’s hard. I went in for a needed hysterectomy, expecting to come out a “New Lady” not disabled. I am 46 and life is a struggle. Hope you get some relief soon. Kindest regards for a Happy New Year 🥳

[teddyjoness in reply to Whangareinik]

Whangareinik, I am so sorry to hear that you are suffering, but I am also grateful that you took the time to reach out. Based on these responses, I am going to hold off on the injections.

[Konagirl60]

You live in the United States....where?

My surgeon, Dr. Antolak, will return a call if you phone him. He says to leave your full name, your date of birth and your phone number. His number at the Centre for Urologic and Pelvis Pain, in St. Paul, Minnesota is

763-219-2166.

I know Dr. Antolak would say NO to Botox. I am certain my pain specialist injected my inner vagina on my left side and my left labia with Botox.....I have lost all sexual desire. She was dishonourable. Don’t use Botox.