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Pelvic/pubic pain fear

Jun 01, 2016 6:40 AM

I have pelvic pain. I'm seeing a pelvic floor pt.
But I'm not sexually active, because I'm waiting for marriage. Only thing is, I planned to get married fairly soon. I know it's not good to freak myself out.
But I talked to him briefly, and he's very understanding.

But any body have any advice to prepare me? I have fibromyalgia, and this pelvic floor pain. I'm afraid I might have vaginismus (? Spelling ?) but I just don't know.

Jun 01, 2016 2:43 PM

I've been diagnosed (dx) with vaginismus, rectall prolapse, rectocele, Interstitial Cystitis (IC), pelvic floor dysfunction (PFD), and Pelvic Congestion Syndrome (PCS). I've been dealing with pelvic pain since about 1997-98, following a vaginal hysterectomy in 1995. The pelvic pain began where I had severe rectal/perineal/vaginal spasms following intercourse. Each time it got worse and worse, to the point is be rolled into a ball of pain, crying like a baby. My PCP have me rx of Levsin to take before sex and it helped some at first. Then I developed an ovarian cyst, needing more surgery. Seven years later they removed a 10cm paraovarian cyst, after 3 years of complaint something was wrong; couldn't pee, poop, or have sex without extreme pain from the navel to the knees. Sharp pains, spasms, increased IBS-C & heaviness in my pelvic floor and thighs set in. It was impossible to do my job or work anymore. Being 54, postmenopausal, I also have vaginal atrophy due to loss of hormones. Intercourse is out of the question due to all of these combined pain causing dx. I had surgery for the pelvic congestion (varicose veins in the pelvis). But every time they cut me they find more scar tissue & endometreosis.

I've gone through pelvic floor therapy (PFT) over 5 times since 2012, both for bladder function & bowel function (PFD) issues, to be able to pee & poop. It's like one thing wrong with me affects another thing(s) and so it is a vicious cycle. I'm under both a GI colon surgeon, Urogynecologist, & Pelvic Floor Therapist. Because the PFT does not last, and each series of treatment gets closer & closer together, I'm now doing PFT at home with a home e-stim unit. The unit was expensive but worth the cost (insurance did not cover). Rather than the previous 1x a week for 6 weeks, I'm able to do 2-3x a week treatment at home. And once my intestines & pelvic floor muscles are working like they are suppose to again, I can go to 1x every other week.

You're younger than me, and hopefully the therapy will bring you lasting results. My doc suggested being very relaxed, even drinking a small amount of wine when this first started, and it helped. But after so many years of the dysfunction of muscles, tendons, & ligaments, it's impossible.

Have a good doctor who knows what they're doing and you trust & feel competent in. Ask your fiance to go to a doc visit with you, so the doc can explain the diagnosis to him & answer any questions he may have. It was very eye opening & helpful for my hubby of 34+ years. Good luck & God bless, with hugs & prayers! 🙂💕🙏🌼

Jun 01, 2016 3:01 PM

Thanks so much! Yeah, I'm glad that I'm figuring this out now. I'm sorry that you had to go through all of that over the years, and I'm grateful for you sharing your experience.
Yeah, I'll probably take him to a session one of these days when he comes in town. Just so he knows and is aware.

Thanks For the hugs and prayers!

Jun 01, 2016 7:24 PM

You're welcome. If we kept everything "shhh" as previous generations, we'd all likely be suffering in silence and unaware of the causes. Have a good night's rest! 🙂💕🙏🌼

Jun 03, 2016 1:40 AM

Jedi, I also have vaginismus, pelvic floor dysfunction(I think), and interstitial cystitis(IC). I'm actually in the process of doing pelvic floor therapy at this point. Currently under a obgyn, urologist, and a pelvic floor therapist. Going back in on Wednesday to discuss options at this point. Spasms keep waking me up at 1 or 2 in the morning, and then I don't sleep for the rest of the night. Going to ask about getting a referral for trigger point injections I think, I'm just miserable right now. My only comfortable position is laying down right now, cause even sitting upright causes those muscles to go into spasm. Have a good night.

Jun 03, 2016 2:46 AM

I'm soooo sorry! I'm sending prayers your way!

Jun 06, 2016 10:54 AM

Yes, Flappys is so very correct. Having a great "team" of docs is critical, and it's even more critical if they communicate with each other. I am a little bit lucky right now. I did have an appointment with both PT and gyn Wednesday, but I had to go ahead and move the PT back a day. If I hadn't done that, I would literally not be able to walk out of the office. So glad they were willing to do that. It's not that I'm scared. It's that too many uncomfortable appointments in one day do NOT make my pelvic floor happy at all!!!!!

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