Can peripheral neuropathy cause pain in women's genitalia?

Posted by rwinney @rwinney, Aug 30 10:47am

I have Small Fiber Peripheral Polyneuropathy (since age 46) and my research indicates yes, peripheral neuropathy causes sexual dysfunction for both men and women. I have been hurting in various ways for several years. Internally, intercourse feels like knives at times. Externally, there is burning, stinging, and discomfort, the feeling of being torn. I also am prone to yeast infections so that is a mitigating circumstance. Then of course there is menopause which, I am not in however, is another mitigating factor. All of this is confusing to me and ladies…we know a woman's body is complicated but, then throw neuropathy our way and complete chaos occurs! Feel free to weigh in as I am attempting to determine my course of action. Do I see a Urologist that is also familiar with SFPN? I have also had bouts of pelvic pain. Do I go with the flow and continue to have no sex life because of the pain? I'm only 50, is this healthy for my marriage? Chronic pain exists throughout my body on top of my private parts being dysfunctional. What to do?

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

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@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.

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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?

Liked by rwinney

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@kellyhahn1

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?

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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.

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