Can peripheral neuropathy cause pain in women's genitalia?

Thanks for the introduction of a timely and necessary discussion @rwinney. The subject is rarely if ever mentioned. As a caregiver for my life partner's four-year assault on prostate cancer, ED and sexual function were discussed as a part of every interface with the Mayo team. "How long?" was the most frequent question. At that time I didn't even think about intimacy, touching, affection, and all those enjoyable activities.

In fact….it might be helpful just to use me as an example. After 18 years as a nun (felt that way), my nurse and protector introduced me to "50 Shades of Grey" and then a self-pleasuring tool called Touch by we vibe. Whether you call it self care or self-compassion, it worked very well.

And then along came Mr. Wonderful. Hmmmm…..what do I do now? Didn't have to worry much because we have spent the last 4 years in some state of prostate cancer (diagnosis, surgery, radiation) and then "Doubting-Thomas" arrived. Did you know that Viagra is automatically given after surgery and for some time thereafter as part of the healing process? My goal was to make sure all the barriers were down and that whatever happened was perfectly fine and supported as meaningful and encouraging. Love is non-judgemental.

And then, KABOOM!…..small fiber neuropathy (SFN) entered my life and the caregiver role began to rotate a bit. I also experienced some less than desirable burning– like the tissue in my vagina was irritated all the time. Like it was raw.

It also appears that the ability to have an orgasm has become old and aged or more likely just dulled by gabapentin. The only thing that still works is to have just enough THC in my medical cannabis to bring those nerves back to life for just one more time. It is disappointing to notice that my precious lifetime partner is nodding off for the evening.

I am wondering how you have chosen to deal with this issue. What can replace the loss of sexual feelings? How do we creatively find, test, and develop new and rewarding ways to elevate the role that intimacy plays in a wholesome and supportive relationship.

May you be safe, protected and free.
Chris

@artscaping Chris, thank you for your contribution. Once again, knowledge is power. The more we learn, the stronger we become. My perspective is that once we find coping skills...for example: topical pain relievers like we use for other parts of our neuropathy affected body, plus the understanding that holistic approaches and lifestyle change like eating healthier and possibly pelvic excercises, may help our feminine dysfunction and pain. Just like how we treat the rest of our bodies regarding neuropathy. Another thought is mindfulness. We become guarded from prior painful sexual interactions. For me, I have premeditated fear and inhibitions and just want to shut down. Working the mind to help recreate new neurological pathways may be a healthy attempt at comfort over time. There is so much to think about. Anyhow, thanks again for chiming in. It's not an easy topic to talk about.

Hello @rwinney, thank you for starting this conversation. I think you are right, our bodies can be so complicated and challenging sometimes- then bring everything else in and we have a story with lots of plots, twists and turns. In your post, you mentioned you have external burning, stinging, and discomfort, the feeling of being torn, and also pelvic pain. I'm wondering if you have given any more consideration about talking to your provider? I know there is a lot to consider.

We also have a Neuropathy group (https://connect.mayoclinic.org/group/neuropathy/), although the conversation there is a little different. Still, there might some value to reading the discussions.

I agree with you, there is so much to talk about and the topic may not be easy for some people to discuss. I am happy you brought it up and hope that we hear from a few more about their experiences. You also mentioned lifestyle changes and pelvic exercise, and I'm wondering if you've tried those yet and if so, have they been working out?

Hello @kellyhahn1. Nice to hear from you. Thank you for your response. I have been a member of Connect since May of 2019 and have been a very active member in the Neuropathy group. Thank you for suggesting it though! I understand the lifestyle changes necessary to help neuropathy and that carries over to feminine health, which is also affected by neuropathy. Reducing or ommitting inflammatory and processed foods. Mental health and excercise. I have recently been researching pelvic floor excercises and may start to incorporate them with my other mild stretching excercises. As for my provider....well, I've had a history of products given to help with discomforts as my PH balance is typically off and I'm prone to yeast infections. I've been on and off probiotics over the years. My feminine health has taken a back seat to the rest of my body for several years. Since Small Fiber Polyneuropathy was formally diagnosed, I kind of shut down. I've recently decided to give it my attention again. I hope my post helps others know they are not alone.

I am so glad to have found a board on a similar question I have about my lady bits too. I was curious if neuropathy can cause issues in that region as well. I was just recently diagnosed with neuropathy in my feet. It’s a side affect of my chemo treatments. Roughly 3 cycles in my feet were really starting to hurt really bad as if I had pressure sores on my heals. My toe nails is actually what first started acting up & then it spread. Like I described to my doc it felt as if I was walking on razor blades & as if my toe nails were being pried off.
Any ways I been noticing some other things popping up such as tingling in my hands, the muscle spasms in my thighs are starting to get a bit worse. But to get to my point & stop rambling, I’ve been feeling a slight burning & a bit of discomfort during intercourse too. I wrote it up as the chemo at first as it’s started me into the early stages of menopause due to the hormone blockers. The slight stinging near my opening & slight discomfort inside, I can handle & have been trying things to help with that. However another symptom is bothering me a great deal, I seem to have become sorta desensitized in the in between region. It’s like I can feel touch, but it’s super dulled all of a sudden & it feels like I am kinda numbed there. So I am wondering could this be the neuropathy or something to do with the menopause or heck even the chemo(chemo is bring on new side effects each time & im feeling more sick longer after each cycle). I know the desensitization is not due to too much sex, as my partner aren’t having sex like we use to before my treatments. My partner has been super thru it all too. Totally understanding, we communicate & have a solid & amazing relationship. So it’s nothing like that & it’s not something I believe is mental cuz the uncomfortable parts of intercourse are getting better with different sex positions, ways we are having sex & lube has help a bit. The slight sting that’s near the opening isn’t so uncomfortable that I’m focusing on it instead of the love making it’s self. Yeah I will admit I’m not my usual self & been under stress but the foreplay & oral before intercourse actually normally would totally relax me & are my favorite usually. The last two times in the last 2wks I’ve noticed the sorta numb but not numb feeling in the region & it’s frustrating. Frustrating cuz oral & foreplay usually always get me going if you know what I mean & nope cuz it’s as if I can’t feel it. I am going to talk to my doc about it & im going to talk to my hubby about it as well, cuz we always communicate about these things. But do you all think it could be the neuropathy?
Ty ahead of time of you answer.

You may take a look at Lichen Sclerosis. I am not a doctor or a nurse. It is a skin condition of the female and also male genital area. It is not contagious. It is an autoimmune condition and is fairly common especially in women. I believe that most people have not heard of this. I recently was diagnosed and am looking for the most homeopathic and healthy food alternatives to correct it. The only treatment I have seen is a steroid cream that can help with symptoms but is not a cure. If you are diabetic the steroid cream can make your blood sugar spike high. This is not an option for me.
There is a fragmented laser treatment available that has not yet been approved by the food and drug agency so it is not covered under any type of insurance. It appears they have had really good results.
This condition needs to be talked about and researched way more than it has been. I believe many people could have this condition and not be aware of it. I wish you well.❤️

I am so glad this topic is coming up! After chemo, I feel as though my vagina has shut down. I’m in menopause now, the stinging, burning and pain during intercourse is too much. We’ve tried and it is too painful. My ob/gyn prescribed estradiol. It does not seem to help. I’m going to mention this to her and hopefully find something.

They have just found a Teratoma in me and for the last several months, I've been having nerve issues in my legs (mid-thigh to mid-calf), weird right? Now I've read that this could be a side effect of the Giant Monster living inside me. (Literally, Teratoma means Giant Tumor) 🙁

Hoping you are finding relief and that I'll have time to read this entire post. Just wanted to share.