Urethral Pain Piriformis Syndrome and interstitial cystitis

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Urethral Pain Piriformis Syndrome and interstitial cystitis

Postby Melanie9999 » Mon Nov 03, 2014 5:38 pm

Hi Does anyone here have interstitial cystitis? I have the main pain in buttocks on sitting but also severe arousal symptoms on pressure to the bladder and front wall of vagina - I cannot wear tampons etc or the arousal is severe and the bladder pain is bad. I then have to urinate about 100 times a day until the vagina calms down. This all happens too if I touch my stomach with the sink, seat belt, tight clothes etc but it feels like I get pressure in the bladder and vagina from this. I have been diagnosed with pudendal neuralgia and nothing else really. I do have severe endometriosis but my periods do not hurt that much because I am perimenopausal now and I know what endometroisis feels like and it never felt like this. I would prefer a pain that I can take painkillers for, not the type of pain that I cannot control at all! If I take Pregabalin I lose all sexual function completely and my partner gets very unhappy so it causes stress and I also gain weight. Amitriptyline does nothing at all other than make me eat too much. I am now trying Vesicare, Solifenacin which worked for the first few days but it knocked me out, know the side effects are wearing off so is the benefit, I feel the same again. Does anyone also have interstitial cystitis with their pudendal neuralgia? If so do my symptoms seem like interstitial cystitis? I saw a gynaecologist who said I don't have it on a cystoscopy but I read that you cannot see it on a cystoscopy anyway. Oh and the persistent arousal happened after the cystoscopy I had over 2 years ago, before the cystoscopoy I didn't have the arousal sensation or abdominal sensation I just had frequency like a UTI. I am sure the cystoscopy was the cause. Please help! I had botox twice and first time it helped in teh levator ani and second time it made it all worse! I also have SI joint dysfunction, wonky pelvis, severe piriformis syndrome which no physio can get under control, I am such a mess I want to kill myself but I have so much to live for it is too sad. Nobody around me could cope if I did that so I just have to live with this awful thing going on and causing me so much distress but I hide it. I look fine to everyyoe else.
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Re: Urethral Pain Piriformis Syndrome and interstitial cysti

Postby Bertie » Mon Nov 03, 2014 6:19 pm

Hi look up a professor James Malone-Lee. I spoke to you in the summer and completely forget to get back as I had been struggling. He is treating a friend of mine who had your bladder symptons, a year on of intensive treatment she is 85% better. I am going to see him tomorrow, as it is looking like I have what many call IC but it is almost guaranteed he will find an infection deep in the bladder wall, and he has many patients who get better. He does not agree with Cystoscopy's as they cause more problems than they solve and the type of testing he does he can see all he needs from the P sample.

I have been under another uro/gynae who goes along the lines of the Prof and I have done four months of antibs and my PGAD noticeably calmed down, but the pain clinic want me to see the prof as he is renowned for sorting out bugs others can't.

He is a great believer that most pelvic pain starts in the bladder, an undiagnosed UTI that winds all the nerves up.i am seeing him privately, go onto the COB foundation website and you will here of lots of ladies in the same way, also people who are under him.

The pain clinic said pregagablin is good for bladder pain, I will wait to see him before trying it. I think your other half is very unfar regards no sex, my husband has said he won't dream of it whilst I am in pain.......and anyway there are more than one way to skin a rabbit. The Professor is in London.xx
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Re: Urethral Pain Piriformis Syndrome and interstitial cysti

Postby Melanie9999 » Tue Nov 04, 2014 4:40 pm

Hi Bertie,

Do you have the same feeling if something touches your stomach like a tight waist band or leaning over the sink. I crossed my arms earlier and still felt pain in my bladder area and into the vagina! I am so scared that cystoscopy has done some serious nerve damage or something but the urogynae man just blames all teh pain on the endometriosis. I don't beleive him at all. I have to wee as soon as my stomach is touched (and it arouses me in a horrible way) as if a light sends an instant spark to my bladder and vagina. I cannot find anyone on interstitial cystitis forums etc that have exactly the same symptoms, nor on pudendal neuralgia websites, I seem to have this one symptom that no-one else has! Vesicare is not helping at all.

I hope that professor can help me. Thanks so much for your reply. How are you feeling are you OK?

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Re: Urethral Pain Piriformis Syndrome and interstitial cysti

Postby Violet M » Thu Nov 06, 2014 5:05 am

Melanie, one of my early symptoms was the feeling of needing to urinate frequently -- that, and the dreadful arousal symptoms. I had shooting pain/jolts through the abdominal area. So, I don't know if my symptoms were exactly like yours but definitely sound similar. I also had pelvic instability, SI joint dysfunction and piriformis syndrome. Please hang in there until you find the right treatment that works for you. I have a great life now -- something I thought I would never have again during the worst of PNE.

PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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