Undiagnosed Pelvic, Urethral, and Vaginal Pain / Itch / Bloating

[FG1984]

I'm desperate for any help / guidance. I went off of the birth control pill back in September 2018. Since then, I've had a slight vaginal itch, but it seemed to go away when I'd get my next period. I got my period every 55 days off of the pill, until February 3, 2019. That was the date of my last period off of the pill. April 19, 2019, I had urethral and vaginal itching and thought maybe it was a yeast infection, so I took a monistat 3 day.

Went to gynecologist on April 23rd for irritated labia, (especially around the urethra) itchy vaginal opening and cysts inside labia. Thought it was a yeast infection. She found additional cysts outside labia. One on left, three on right...three inside. 7 in total. Talked to her about how I haven't had a period since February. So she gave me progesterone and we agreed that spironolactone would help with the cysts. So started both that night. BV test came back negative. Put cortisone cream inside labia for itching relief for a few days. Due to progesterone pills, got period on May 1, 2019. Lasted 6 days. Itching Symptoms never went away.

Still had an itchy urethra and vagina on May 28, 2019...a month later. Stopped washing that area. Changed soaps to unscented dove. Don't wear underwear when I don't have to. Using over the counter cortisone cream for the past month. Skin on labia was highly irritated and red.

On May 31, I went back to my gyno to have her do another vaginal exam. She ran a urinalysis for STDs and swabbed for BV. All came back negative. She decided to still prescribe me Tinidazole to just see if it is bacterial and if the tests are messed up. So I finished my last dose of tinidazole at 9pm on Saturday June 8th). Burning urethra when I put cortisone in labia. The pain in my abdomen and urethra was excruciating. Kept having to pee. Urine had foul odor. When I peed it burned. Secretion from the urethra. Secretion from the vagina. Constipation. Pain when defecating. Haven't pooped in 2 days.

Went to my family doctor on 6/10. In office urine lab test showed high white blood count and blood in urine. Urine Culture came back negative for bacteria. They prescribed me Nitrofurantoin 3 days. Felt no better / no relief. Switched to Doxycyclene 7 days.

The doxy worked for the most part, but it didn't completely go away. I felt a lot better, but not 100% while on that. Still had just a dull pain in my urethra after peeing, but all else went away. Finished last dose on Thursday morning 6/20. Then my lower back started to hurt, my bladder hurt again, my urethra burned when I was sitting or peeing. Burning is non stop. Constant pain. Can't sit down. Secretion from urethra. Ovaries hurt. Vaginal opening hurts. Bloating. (Could be ovulation / about to get period). Last period was 5/1 from progesterone pill.

Lots of pain and pressure in abdomen when I go number 2.

Lots of pain in urethra and vagina and lower abdomen and lower back when I sit for too long. Only get mild comfort when I lie down on my side. Pain when I lie on my back.

6/23 - went to the ER for the pain. They did more blood and urine tests, a pelvic exam to test for bacteria and STDS, and a topical and vaginal ultrasound. High white blood count in the urinalysis and +1 white blood count in the uterus. Urine culture came back negative for bacteria again. They prescribed me 4 pills of flagyl given in the office at 7pm. 1 pill of Diflucan and 1 pill of keflex.

6/24- started taking keflex (cephalexen) 500 MG 4 times a day. Felt better at night.

6/26 - felt great in the morning - starting at 7pm back to burning in both the urethra and vagina. Hurt to sit. Constant burn even while lying down. Pelvis hurts and is bloated.

6/28 - follow-up gyno appointment where I broke down in tears. Can't sit. Can't go to work. Don't leave my house. Pelvic bloating, pain and irritation in urethra and vagina. Pain in center of bladder. Pain to the left and right of bladder. Labia looks atrophied and still have heavy vaginal secretion and urethra secretion that is non stop. Gyno consults colleague and tells me it looks like a vulvovaginal disorder that pre-pubescent girls have. She recommends I see a vulvovaginal specialist. Can't get an appointment until the end of August. Gyno prescribed me clindamycin vaginal cream for 7 days, methylprednisalone for 6 days. I also begged her for a prescription for the birth control pill again.

7/3 - demand my general doctor to send me for blood work to check my hormones. Gyno refuses to believe this is hormonal.

7/3 - visit a urologist who tells me she thinks some of it is muscular and some of it is hormonal. She does another urinalysis, but no white blood cells present. I think the keflex killed the uti. No longer feel burning when I pee. Just vaginal and pelvic symptoms still exist. Itchy urethra, pain in vaginal opening, pain in pelvis, hurts to sit, atrophied labia and vaginal and urethral secretions. Urologist writes a prescription for physical therapy, schedules a cystoscopy for end of July, and tells me it looks like I have menopause symptoms and to talk to my gyno again.

7/3 - I started the clindamycin and methylprednisalone and the birth control pill after talking to the urologist.

7/6 - I stopped taking spironolactone.

7/7 - I felt slightly better.

7/8 - the pain keeps ebbing and flowing...some days it's barely there (but still there/feels like it's getting better), other days it comes back in full force. Today I felt fine in the morning, but now after sitting for a while, my urethra hurts, it itches, my vaginal opening hurts and itches, I'm having sharp pains to the right and left of my bladder/uterus. I'm all bloated after sitting. It burns when I pee, hurts when I poop. It feels like there's a lump or something on the left side of my pelvis...or at least when I put heat on it, it feels better. I laid down for an hour a on my back with a heating pad on and my pain seems to have subsided and now I just have an itchy urethra and vagina.

Hoping someone else has had this experience and can share what they found!!! Please! I'm beyond depressed.

[kalecolbe12]

You seem to have pelvic floor dysfunction...and/or interstitial Cystitis....which can involve nerves and muscles.... I would say get to a pelvic floor physical therapist ASAP they know all about these symptoms and they can help you...after that perhaps urogynecologist and acupuncturist but the PT will put you on the right path please listen to me ... Doctors don't understand some of these things with pelvic floor...pelvic floor physical therapist do and they will guide you in the right direction you may have to also go to urogynecologist and for acupuncture

[FG1984 in reply to kalecolbe12]

Thank you. I have an appointment with a physical therapist for pelvic floor muscles this Thursday.

One of the other things I've been reading a lot about is Pelvic Congestion syndrome. Some of my symptoms sound very similar to that only because the pain gets worse when I sit.

I didn't think about acupuncture, but that's a great idea.

[cupcakekitty07 in reply to FG1984]

I agree, it sounds like you have a lot going on, like pfd and IC, both of which PT should help with. Pelvic congestion syndrome as you said could also be playing a role....I have that and it definitely gets worse throughout the day, and definitely makes my pfd and everything else worse. I wonder about the cysts/lesions though.

I have a coworker that had bad burning, itching, pain, sometimes bleeding, and bad atrophy and she kept being bounced around from gyns and derms and prescribed all kinds of cremes and treated for yeast infections. Last year she was diagnosed something called lichen schlerosus where it was also affecting her vagina as well, which is I guess less common for it, but it sounds potentially similar to what your experiencing? She's found best relief with steroid injections paired with a creme. But really it seems there are so many things they just don't know about or understand, so it's potluck with who you see. Apparently vaginal lichen sclerosus isn't fully understood either, her doctor told her they suspect there might be an autoimmune component to it, and it just generally sounds miserable to me. You said you've had some biopsy taken, what were they testing for there? I really, really hope you get some answers and relief!!

[Monique1649]

I am so sorry I feel like I have nothing to help you, but it sounds overwhelming. It seems like such a combination of symptoms but it all started with one thing. What did they feel the cysts were, and did they biopsy any? What a great diary you have kept, it is sooooo helpful as you walk through this.

[FG1984]

So I've seen a vulvovaginal specialist and a GI specialist and here are the multiple diagnoses so far: I have Vulvodynia (which they will be treating with a topical antidepressant and nerve blocker cream); I have pelvic floor dysfunction (which they will be treating with physical therapy); I have endometriosis (which they will treat with the birth control pill and PT). I'm also getting tested for Polycystic Ovarian Syndrome and I have a Cystoscopy scheduled with my urologist for the end of July to see if I have interstitial cystitis. No one knows how I got any of these things or why they just appeared out of nowhere all of a sudden.

Refrequent, unfortunately it's not a UTI as I've already been treated and tested for that. They think the pain I'm feeling is endometriosis, Vulvodynia and interstitial cystitis.

I will post again when I get the results of my cystoscopy. I have follow up appointments with all of the specialists in August and September and have my first PT appointment today. *fingers crossed that this gives me some relief.*

[Subarusvx1000 in reply to FG1984]

Fingers crossed. I feel for your pain.

[Monique1649]

Fingers crossed.♥️

[Interstitpudendalhel]

Hi, i'm so sorry for your torture! Been there done that with Mayo for a year and it was pointless hell. Regarding Interstitial Cystitis, unfortunately, too many providers are throwing this diagnosis around too casually as an umbrella term for all pain in the pelvic/urethral/bladder area. Advanced medical systems, such as Beaumont Urology (Renowned Dr. Ken Peters, IC Specialist), is trying to educate the medical world that the IC diagnosis truly should be for those that have had cystoscopies that reveal true lesions. If you have not had a cystoscopy yet...ask for one, (sorry if I missed it). If no lesions or strictures, there are more appropriate conditions with somewhat more optimistic treatments, such as bladder pain syndrome or vulvodynia, pelvic floor dysfunction. The burning and itching pain in the urethral area (which i can sadly relate to)...sounds very much like a possible pudendal nerve involvement. Confirming this is really quite simple. It does not take finding a pain specialist to do a short acting/diagnostic nerve block. Many Ob/GYNs actually do them to their delivering Moms either during delivery for pain when epidural is no longer option and for vaginal repair if delivery was a bit brutal on Mom. It is a vaginal injection that bathes lidocaine around the pudendal nerve and if you feel the burning and itching stop immediately, you know you've got some pudendal nerve involvement. The PT should be very specialized in their training or they are POINTLESS. If they are, they may be tremendously helpful in understanding your insides and possible therapy to release tension of compressed areas. You are not alone and you will get through this as it's clear you are a fighter!

[Interstitpudendalhel in reply to Interstitpudendalhel]

Ps: the diagnostic/short acting nerve block truly lasts only an hour to max 4. Lasted only an hour for me, but I bawled the whole time because it was so bittersweet to feel my life again.