Pain or spasms upon arousal????

[monkeymom]

I have been diagnosed with ic and pfd. Does anyone have pain and/or spasms simply upon arousal. My husband and I don't even have to be actively involved in sex but if become aroused I have severe pain and severe rectal spasams so I have cut off all activity including simoly kissing. I know TMI sorry for that but I would love to know if there are others with the same issues. I do at home instillations and am seeing a therapist, but nothing is helping. This is condition is affecting my marriage and my relationship with my daughters. I am unable to wotk and hsve had to apply for disability---talk about a blow to my ego. Thank you for listening.

[Owenrach]

This can happen..where do you live? Are you seeing a physiotherapists?

[monkeymom in reply to Owenrach]

I am in pa. I had been seeing a physical therapist but it was not helpoing so i stopped .

[Lookingforanswers in reply to monkeymom]

I have never tried physio for it and wonder do you have to find a special physio as can't imagine saying it to the one I've been going to after my broken wrist!! But if it doesn't work anyway...

[Lookingforanswers]

Hi, I was amazed to see your post as that is what has been happening to me for the last 4 years! It started slowly over a few months, but has been getting worse over the years. It has devastated my relationships and I don't have any now and am put off wanting one as sex represents pain for me at this stage. I am middle aged and I don't feel that the medical profession are very interested. I get the impression that they think its in my head and after a few tests I was just referred to the pain clinic, which didn't help at all and now I don't go anywhere or do anything about it, as I think that this is just my life now. I would love to know what diagnosis you got as I don't understand the letters. It is great to find someone with the same complaint as I have only told one person as I feel such a freak!!

[monkeymom in reply to Lookingforanswers]

I thought i was the only one with these symptoms as well, until i mentionepd it to my doctors and physical therapist. It is an embarassing question but please ask, they will hopefully explain why. I have pelvic floor dysfunction and IC. This condition has such a huge effect on my family and the relationship with my husband is strained. He is very understanding about the whole intimacy issue but it is still strained. Everytime we try to be intimate it does not end well. Please private message me to talk more.

[Lookingforanswers in reply to monkeymom]

I would love to chat more and have spoken to a few medical ppl but they seem to have no answers! They think it could be from a scar that is 30 years old, but that doesn't make sense. It is very depressing isn't it and has cut out such an important part of our lives. How do you private message?

[monkeymom in reply to Lookingforanswers]

I am not sure how to private message on this site, it must be another site i am on. We can email if you would like

[Lookingforanswers in reply to monkeymom]

I would like that as there is only one friend that I have confided in as I am too embarrassed to tell others as I had never heard of anyone having a similar problem until I found this site! My address is [e-mail]

[monkeymom in reply to Lookingforanswers]

Ok i will send an email to you..

[monkeymom in reply to Lookingforanswers]

I did send you an email let me know if you get it where do you live

[monkeymom in reply to Lookingforanswers]

Please contact me. I am really interested I talking with others about these problems

Let me know when you are up for a chat

[NatashaVerna in reply to monkeymom]

Hi monkeymom,

Did the doctors tell you that you have pelvic floor dysfunction and IC as an explanation to the pain? I too have this problem where even just being aroused, or dreaming of being aroused causes this horrible pain. I don't understand why it's happening, but it's negatively affecting my life as well. :(.

[jacquieb Volunteer in reply to Lookingforanswers]

Have a look at my reply jx

[ally3074 in reply to Lookingforanswers]

Hi i am in exactly the same position ..im in my 40s and it started when i was 39 .. 4 yrs ago too ..how do u cope ..sexually i cant be in a relationship .. and what man wants half a woman

[Lookingforanswers in reply to ally3074]

I'm sorry to hear that ally, but don't give up on relationships altogether as with the right partner, it is possible and sometimes frequency helps the pain..

[jacquieb Volunteer]

Hi to all, ok it does have something to do with your pelvic floor, it's your muscles contracting and having sex uses certain muscles that you don't use all the time. This affects the bladder and bowel. So what is the answer,.yes try therapy if it helps great if not? As a long term sufferer for me has been a muscle relaxant taken regularly when you have sex maybe take one before or after sex? ic , you can try the different diets, keep off citrus chocolate wine coffee tea etc it helped me a little but again its trial and error . You could also try a muscle relaxant like detrusitol a bladder relaxant, or cycta q or prelief the last two are not prescription drugs but again helped a little. Never let your bladder fill to maximum, this attracts contraction. As far as sex is concerned you need to start slowly witha patient partner. Try different positions. Unfortunately with sex the friction doesn't help on the bladder wall. There are no magic answers and feel for all of you that suffer from this condition! It's cruel . If anyone would like to chat further let me know. You need to go back to basics jx

[xweeta]

Hello,

I actually started writing on this forum because of the exactly same pain.

I'll transcribe what I wrote in the my first post:

"Just a few months ago I started to get a different specific pain in my pelvic region when I am sexually aroused especially when I am quickly aroused (never felt this before).

This sharp stabbing pain can be caused just by watching a romatic scene (movie) or by watching porn or when I feel something related to love (without touch).

I do not feel this specific pain in my daily life, ONLY when I'm aroused.

Now, I think it could be something related with the nerves responsible for sexual arousal"

I have endometriosis and i told about this pain and to my gynecologist. I asked her if I could have my nerves affected by endometriosis (because of this pain) and she told me that endometriosis always affects the nerves, but she didn't care about this pain.

Because I don't have a boyfriend I did not experienced any treatment so far, but I read a lot of things about nerve pain and nerve damage.

I know that some medications for neuropathic pain can help. Also opioids can help and benzodiazepine, but I have never took them for this pain.

Among other treatments, there are the nerve blocks (injections in the nerves) that relieves pain by interrupting how pain signals are sent to your brain. Also nerve blocks allows allows to detect the nerves that are affected to proceed after with a treatment (surgery eventually).

A more radical treatment is ablation of the pre sacral nerves that transmit pain in the pelvis.

I know the hypogastric plexus is involved in arousal and block this plexus could eventually help.

Did you ever taken medication for neuropathic pain and opioid for that specific paint? If yes, did it helped?

[Hugo3596 in reply to xweeta]

I doubt it helps. But it is the same for me too as a mere man. Soon as my brain starts to think about sex in any form the arousal is immediate and so is the pre burn. But what to do about it? Lol

Telling a Dr. is a waste of space imho, apart from the embarrassment. I'm also not sure anyone else would truly understand, unless they have it themselves.

[monkeymom in reply to Hugo3596]

My heart goes out to you. When I was doing physical therapy, my therapist told me that men with pelvic floor dysfunction don't really have anyone to help them. If you could talk to your doctor maybe physical therapy may help. Sending prayers to you.

[xweeta in reply to Hugo3596]

Hello,

I took 75g Pregabalin (a drug for neurophatic pain, lower dose) yesterday and i tested it on my sexual arousal pain.

Under the effect of pregabalin my sharp stabbing sexual arousal pain improved at least 70%-80%.

I didn't like the side effects of the drug. After the first hour I started to feel anxious and dizzy, but I had never taken so I presume that the body gets used to it.

My conclusion is that the arousal pain is neuropathic pain because the medicine worked with the lower dose. And I suspect that the affected nerve can be pudendal nerve.

I believe maybe a nerve block (with injections) work better with fewer side effects.

You are a male but the nerves are the same for female and male: painspa.co.uk/wp-content/up...

At least something has worked...

[ireallymeanthis]

I've had this for many years. Excitement, especially sexual( but not only) makes the pain unbearable, so there's no point in sex. The more intense the excitement ,and the longer it goes on,the worse the pain gets.

It took me a long time to admit to all the symptoms as I was afraid of not being taken seriously.They also became more complex and difficult over time.

Who would have thought that noise would worsen the pain? This has a big effect on my daily life and I am pretty desperate.

It was caused by an injury during hydrotherapy treatment. You can imagine how angry I feel at the therapist.

At the hospital, they were a generally unsympathetic lot,which put me off going into the more personal detail.

These days I am under pain management and they call it neuralgia, or neuropathic pain and I have max. gabapentin plus amitriptyline, and anti inflam. gels. I find lying on a pair of frozen cold packs ( under my buttocks)brings some relief.Though heated packs are also good. Also relaxation.

It has to be the pudendal nerve, but I don't have that diagnosis.

[monkeymom in reply to ireallymeanthis]

My heart goes out to you. I have been referred to pain management which I have been putting off but I think I have reached my breaking point. I am sorry you have this pain. I am glad there is support like this out there who understand. Thank you for you responding. Hetes to hoping we all can get some type of relief soon.

[Hugo3596 in reply to ireallymeanthis]

Yes it's a real big job opening up about the intimate I effect it has on you. When I first became aware of it last Feb ish, I didn't have a clue what was going on or that it might be a symptom of an irritated nerve. No one to turn to. Unfortunately the saying.....behaviour breeds behaviour is sometimes painfully true.

But even so when I finally went to the Dr I certainly didn't confide the whole story with him.................I got to a certain point with it whereby he was laughing at me! Maybe I should have gone to a female Dr. Anyway I clammed up after that until by chance PN was brought to my attention about 9 months later. Then the penny dropped for me and I understood what I had gone through which enabled me to explain to my wife.

[sweetcheaks_1794]

I suffer from the same as you I don't know what from could you possibly send me some answers please in way of relationship with my bf. ......thanks.

[Shanellope93]

I suffered with this intense pain upon arousal for 24 years. I've had numerous diagnosis and surgeries including on the pudndal nerve and hysterectomy but nothing came close to touching the strange arousal pain. The hundreds of Doctors I've seen were baffled. Until I found Dr. Mia Swartz in Issaquah wa. She specializes in women's pelvic conditions and determined I had pelvic muscle spasm. She treated me with botox injections and now PT and I'm having intimacy with my husband pain free for the first time in our marriage of 23 years. I had almost lost all hope and resorted to living on medications for my whole life but now I'm weaning off them and celebrating. There is hope. If you suffer from the strange arousal pain and discomfort sitting etc find a doctor that specializes in pelvic disorders and uses botox.

Hugo3596,

can I just add I am so angry any doctor would laugh or not take seriously any condition, especially a pain condition. Keep searching. Internet research has been the thing that has saved me because most doctors just do not know. There are a very few out there. if you find them they are worth traveling to. Sounds like you may have some pelvic floor (men have a pelvic floor to) muscle spasm that could be irritating the pudendal nerve which runs through the tissue and muscles of the pelvic region and allow us the the function of urination, bowel movements and clitoral or penile sensation. Check out a doctor in Phoenix. Dr. Michael Hibner. He does botox in the muscles to try to help them relax and heal. That's what has given me relief. Although, i got it done through a womens health doc in WA state. He also does pudndal nerve surgery which is much more invasive and for me didn't touch the arousal pain. Improved some sitting passion but that's it. Fight for your health. I've been doing it 24 years is finally off. ..and it helps that medical advances arts finally catching up, ie. Botox.

[Bexstar74]

I'm glad to find I'm not alone. In the last two months being intimate with hubbie and immediately after orgasm I'm finding I'm in awful pain with stomach and pelvic spasms.

[Shanellope93 in reply to Bexstar74]

Your pain sounds a bit different than mine since it is after the act whereas mine started at arousal. But the pelvic muscles and pudendal nerve could still be involved.

have you seen a pelvic pain specialist or urogynocologist? So many of these previous posts are years ago I'd like to hear how they now, and also from people suffering or healing more currently. Mine has been a 24 year fight to see real results and hope, after so many surgeries and therapies but I'm getting there. It's worth the fight. Hang in there.

[boomer53]

I have ben intrigued by this discussion thread!  I thought I was alone in my suffering. My gynecolgist is sympathetic and taught me to practice relaxing the pelvic floor but it doea not work. I want to know why this condition occured spontaneously about 4 yers ago. I have not had aex since and we all agree that sex is vital to our mental health. What can be done?!?

[Mauve19]

Hi, did anyone ever find any answer to this? I am desperately looking for a cure or at least a diagnosis for this. Hope someone here found out something. Please, please respond.

[Shanellope93 in reply to Mauve19]

I have not been on here in years due to getting a new diagnosis of Lyme disease and trying to treat that. The pelvic floor problems became the least of my issues but now that I've improved in my all over health I'm back to pursuing relief there. Did you ever get replies or answers. I hope you've found the help you've needed. I had success with Botox the first go around and not since so I'm back to Dr Hibner in AZ to try to get it figured out. I hope you are well.

[Mauve19 in reply to Shanellope93]

hello, I haven’t checked this space fir quite some time therefore the late reply. I’m so sorry to hear about that - hope you’re better and healthy.

No, I had no luck as such. Made another post and someone posted there that this might be a mind and body connection and it’s muscle memory that triggers this reaction when I’m under stress. I’m just desperate to find out.

Please let me know if you come across something.

[Shanellope93 in reply to Mauve19]

hello,

Since my last post I have done Botox two more times without relief so its been determined that the pudendal nerve itself is reactive and no longer relieved with muscle relaxation. So I went to someone else. Tried something new and there seems to be some relief. Quite a bit but im hesitant to actually say it dont know how long it will last. I had a radio pulsed frequency done directly to the nerve by an osteopathic pain doctor in Seattle. He also injected platelet rich plasma around the nerve and some other things. Don't really like him much but he is doing cutting edge things to treat pudendal neural neuralgia. The pulsing is supposed to re train the nerve and its path ways. All imagine guided which I appreciated. If you haven't yet been diagnosed with pudendal neuralgia he'll do a guided nerve block to get a definitive diagnosis. Downside is its not covered by insurance so there goes another 10,000 on the credit card. Ugh. I hope you find someone to help. I have a friend who has the e stim implant and has can get more names of doctors if you're interested.