Newly diagnosed, advice Needed - cytoscopy neccessary?

[Mamacitas]

Hi everyone,

I'm a 27 year old female newly diagnosed with an irritated pudendal nerve and a tight, painful pelvic floor. I've had painful sex and back pain on and off for the past 2 years, but dismissed it as nothing serious. My noticeable symptoms started 2 months ago; they include having the constant urge to urinate along with lower pelvic pressure and sometimes pain, mostly focused on the left side as well as lower back pain on the left side. This then evolved into random aches in my vagina and throughout my abdomen, again mostly focused on the left side as well as numbness on my butt after sitting. Sometimes I also feel a sensation of arousal/clitoral overstimulation when I am, of course, not aroused. All of my symptoms feel better when lying down and much more intense when sitting. I'm also much better off in the morning and get worse as the day progresses. I should also mention that I started a new job about 6 months ago that requires a lot of sitting - I think this is what triggered everything.

I realize that I'm very fortunate to have gotten a correct diagnosis so quickly. At first I didn't believe it, but when my doctor pressed on the pudendal nerve endings, I literally felt every symptom that I'd been feeling for the past 2 months all at once, plus terrible burning/shooting pain. My physical therapist also confirmed the diagnosis. I'm thankful to now at least have an answer.

I'm currently trying to avoid sitting as much as possible, using a Boppy cushion and/or a kneeling chair, and lying down at home. I've also been told by my physical therapist that I can't have sex until I get better, so my boyfriend and I are abstaining from that I just started physical therapy for PN and pelvic floor - I'm fortunate to live near a women's pt center that specializes in this.

It's overwhelming looking for information on the Internet because there's just not a lot out there and also because there are such a variety of pudendal nerve conditions. I don't have intense, unrelenting pain like many stories I've read, but the vaginal sensations and urge to pee have really interrupted my life. The cushion and lifestyle changes immediately improved my symptoms, especially the urge to pee, but I'm scared about what the future will hold. Can anyone relate to my story and has physical therapy helped? This all came out of nowhere, and I don't know what to anticipate; I never thought I'd be having an issue like this at 27. If anyone can relate to what I'm going through and has advice or a success story, I would be grateful to hear it. I just need some hope that I can get back to normal or at least close to normal.

Ps- My urologist scheduled me for a cytoscopy with hydrodistention (under anesthesia) to rule out IC. However, my pelvic pain specialist who diagnosed me with PN says that none of my symptoms match IC (diet modifications made no difference and acidic foods don't flare my symptoms at all). Do you guys think the cytoscopy is neccessary? Id love to be able to rule out IC for sure, but I'm scared that the procedure may aggravate the nerve or make my symptoms worse. Anyone have experience with this?

Thanks in advance for any advice and support

[Barbie]

Hi

I had a cystoscopy, which ruled out IC at beginning, but I think consultants quite often go off symptoms more now and call it painful bladder syndrome, my symptoms sound similar to yours, I have been diagnosed with vulvodynia. I don't have the pain with sitting thing, but my symptoms have settled to left. I use Lyrica for pain which works well for me. I find the "heaviness" symptom worse in morning, which could suggest bladder. Wishing you well withholding out IC, try to stay as stress free as possible, that's important, any questions, feel free to ask.

Best Wishes Barbie

[Violet M]

Welcome to the forum. Many of your symptoms sound similar to what I experienced including the feeling of needing to pee frequently. Taking Lexapro significantly improved that symptom for me. You can see from my signature that I am doing very well now and I'm not on any medications for PN anymore. I sit for many hours a day at work without any problems. I do have to avoid certain activities such as heavy lifting or exercise that is high impact.

I can't say for sure about whether you should have the cystoscopy. I never had one and I'm glad I didn't because I think it just would have irritated the nerve more. If you type the word "cystoscopy" into the search bar in the upper right you will find quite a few posts on that topic.

I wish you all the best with your treatments.

Best,

Violet

[rick]

Hello,

I had a cysto about a month ago to biopsy a small growth of my bladder. I was under sedation.

Also, the biopsy was to consider possible neurologic bladder. I refused the bladder infill procedure.

Thankfully, biopsy negative. I also had a biopsy, no sedation, about 3 years ago to investigate whether I could

undergo a surgery. No problems, I decided to pass on the surgery. There was discomfort both times.

Went away 2-3-4 days. I did feel the benefits each outweighed the risk.

Both biopsies were done by talented, experienced urologists. One in New York City, the other Bloomington, IL.

They were the best I could find.

I would never consider an injection, surgery etc.

In the literature success rates poor and very little reliable data reported by surgeons.

I feel strongly; use the best MD's you can find. Investigate, research. Control your medical situation.

Take charge. My mantra has always been - Nothing Invasive. I wish you the best.

Rick

[Mamacitas]

Thanks everyone for answering. Sorry it took me so long to reply; I'm a grant writer, and I've had 2 deadlines in the past week.

After reading everyone's comments as well as talking with my physical therapist, I decided to cancel the cytoscopy. My feelings of urgency have gotten 10 times better since I started avoiding sitting, and my diet hasn't made a difference at all. Basically, I think my urologist was guessing more than anything, and I don't want to undergo an invasive procedure that could potentially irritate the nerve more. I knew I made the right decision when I called the office to cancel; he got an attitude and told me that he thinks pudendal neuralgia isn't a valid diagnosis because he's never heard of it and to call him when I'm ready to be treated.

Making lifestyle changes and avoiding sitting has helped a lot. I don't have a strong feeling of having to pee anymore. Occasionally, I'll get it towards the end of the day if I'm doing too much driving or sitting, but for the most part it's calmed down. I still have random burning or aching pains in my abdomen and vagina; it's every once in a while though, so it's not bad. I also have a really annoying full feeling, like a foreign object almost, on the left side of my perineum or external vaginal area. It's uncomfortable, but I'll take it over the having to pee feeling any day.

I've been working from home as much as possible and using a kneeling chair at work. I feel like the kneeling chair I got isn't the best, so I'm going to return it. I just bought a varidesk pro plus 36 (desk riser) and the stance move ext chair (3 in 1, sitting to kneeling to standing); I'm having both shipped to my work. It was expensive but I figure it's an investment in my health and keeping my job. I know I need to avoid sitting at work, even with a cushion, as much as possible to hopefully get better. I'm in the very beginning stages of physical therapy and they're saying I have pelvic floor dysfunction... hopefully loosening those muscles will calm the nerve or release it if it's entrapped. I understand that it could be the other way around - that the nerve is causing the pfd - but I hope not. I'll post some updates on my office equipment and pt progress in other categories on the forum.