Health Organization for Pudendal Education

Hi everyone,

I am a 26 yo girl who would like to date again before dying. I live in London for my studies and there is more than enough choice, but I have zero confidence anyone would want me with sexual dysfunction. I cannot even have outercourse, and unless I can find someone who enjoys copious amounts of ... the other thing besides PIV I will go single for a very long time.
I have nothing else wrong with me (thin, smart, bla bla) but I can't even imagine what I'd do after a date. I can sit down, but I can't walk long distances.

My only other solution was going out with a REALLY OLD man. I am running out of ideas.

wishing you all a late Merry Christmas

Mary Jane, hopefully you will get better and be able to have an enjoying physical relationship but if not, you can still give someone else pleasure even if you can't enjoy sex yourself.

Violet

hi violet,
Yes, however I don't know how many men would be pleased with just that

Hi,

I sympathize with all of the posters on here. I am the wife of a man who has been recently diagnosed with PNE and have witnessed his suffering and pain over the past 5 years. It has broken my heart watching his journey and struggle finding answers to a condition that was long deemed "mental". I also sympathize with those who find that naming the condition does little to assuage the pain.

My question is, are there any support groups for the spouses of those suffering from PNE? If not, do you feel there would be interest/value in creating one?

Many times it can feel lonely and confusing as the spouse of a partner going through this, especially if there are no answers or effective treatments. The severe impact this condition has on a marriage is real, and I feel as if the medical community may not realize that PNE has real impact on the families of those afflicted. We hear, "Be understanding! You must understand the depths of this condition! His anger situation and is not directed towards you, so be patient!" , but do not hear, "How are you coping? How has your relationship fared? Are you doing anything to take of you while you support your spouse?"

The spouses who are coping with the sudden lack of intimacy, both physical and emotional, the emotional distancing from their spouses, the days where his/her frustration and anger are directed towards you and your kids leaving your feeling at fault/the trigger of her/his pain, and the days where you are reminded that the future "cannot be planned" - there is a large amount of loss without discussion about how to support the spouses who are trying to physically care for their wife/husband, taking care of the kids, and working to support the household.

If you are aware of spousal PNE support groups, please message me.

The more we can support those who are afflicted, along with supporting those who care for them, the better wrap-around support we can create to help those with PNE.

Thanks!

QK

fair enough, it is hard, but it is much harder on a young person to suddenly have to give up on any hope of ever getting married at all in this lifetime, I am going to sound very mean saying this so sorry but at least other sufferers are 60, 70 years old and at least they lived a big part of their lives without this problem/illness and they already have children.

How would you feel to have your world drown in your 20s? I was perfectly active and healthy 5 months ago, now I have to take into consideration factors like never being able to get a job, drive, date, marry, have kids, have a social life

support groups? they help, but not as much as one would think, sometimes listening to things like "I've had this for 20 years" makes me even more depressed

Mary Jane,
Please do not give up hope of all those things! I am also 26 years old. When I first started with PN 2.5 years ago, I though all those things you listed were lost to me as well. In fact, my fiancé did break up with me because I could not have sex and was always in pain. After reading about failed surgeries and so much suffering on the forum, I thought I was doomed. (I really think there were fewer success stories a year ago or so) But then, miraculous things started happening. I found the right treatments for me, after over a year of trial and error and crying, which reduced my symptoms to the point that I hardly think about them on a day to day basis. And, I started dating (and living with) someone who is so supportive of me that he loves me just the way I am, chronic pain and all. I still have some pain, but it's nothing like it was and I think of myself as "normal."

I write this not to minimize your suffering, but because I 110% understand where you are coming from and I want to give you hope. Even though I read about a lot of suffering on this forum, I literally would not have figured out how to get better without out and all the support of the people here. Please feel free to PM me when you are feeling down.

Hugs,
Jackie

Mary Jane,

We have had several men on here who felt similarly isolated because of their own sexual dysfunction; and the causes of male sexual dysfunction are not limited to PN / pelvic pain disorders. Have you considered getting creative with online dating to see if you can meet young men who also feel isolated from a romantic life due to inability to perform sexually?

thank you so much, girls !

you are very right indeed. people do not choose illness, and we deserve a love life just as anyone else !!!
@Jax love to hear you have found someone who is understanding!
@hermajesty I have an online account now and will start meeting guys soon, I'm going to be very careful about tackling the "confession"

This is encouraging and I guess there is hope that I just found out about. I have not had sex for years and not even sure how long before PNE hit full force in 2020. I had PNE surgery in 2011 but still have mot had courage to try. My gynecologist that is PPN aware just asked if I was thinking of trying and why I would not. I told him I was afraid it would cause painful flaring like some some evaluations I had recentlly. He said that he can send me for PT and there is a good chance it could work without having the major pain. Might be some trial and stop and more PT but this might work. My hubby has been very patient because he has said he does not want to hurt me and the doctor agreed no husband should be hurting you. Any way I just have to figure when to try all this and get the PT set up maybe this summer. I wish you the best Mry Jane and everyone with our trials.
Janet

I know your original post was a while ago but I will add my thoughts in case it helps others in the same boat.

I think many of us have these same thoughts, worries, concerns..which are of course very valid and real, and worse when the pain is worse (makes me feel unfit for relationship at times like I should retreat from all things).

When I first experienced the infection that caused my IC and PN, and subsequent symptoms, I was in a relationship. My then boyfriend had known me as an incredibly healthy person and we had lived all of the world in active adventures. He was a huge support dealing with the original issue and onwards because he could see it was such a change and not my fault and not my norm, and he had a unique calmness or avoidance of his own emotion and preference for being there for mine, along with being very patient and helpful hearing about the whole puzzle of it. He also was not put off by any of it. That said I went to all my appointments alone and felt quite isolated in other ways but he was a major support. We ended up parting ways for other reasons.

After some time on my own I wanted to date again but was unsure if someone would want to date me with this condition--there is something offputting in my case about needing to go the washroom very frequently at times and not sitting etc.

I started dating someone which started slowly talking on the phone for two months. On our first in person meeting I told him more about my injury etc. and he was not concerned at all. he said his mom had chronic pain from a work injury and his family had all kinds of issues. It turned out he was very understanding and not at all put off by this even remotely. In my case it was very different in that I didn't have sexual dysfunction. That said, there are times when I have infections so we have to use alternative intimacy methods. Overall he is very supportive and the main thing is my quality of life is much higher having the fun parts and intimate parts of relationship...because symptoms are downers.
The truth is that everyone has something--everyone's families have something. As you said you have many positive qualities..so there are many men I believe who will feel grateful to be with someone like you, and will also be very caring, and there are ways to be creative with intimacy and closeness..and also continuing to focus on getting better helps.

I wish you the very best in your recovery and love journey