Frustrated with Intimacy Issues - Seeking Advice & Support for Pelvic Health

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Dave_Ileomatic

Hi, new here kind of... I never had the mental strength to speak openly about my issues as they are somewhat out of the norm. To give a short explanation, I have an ileostomy and have had it since October 2018. The reason for it is due to something wrong with my pelvic floor and/or nerves. I suffer from painful erections, and if I do ejaculate, the tension is unbearable. Even lying down flat causes massive pains on my left flank. So far, there has been no real answer on what is wrong due to a lack of knowledge in my area, as well as being reduced to public medical assistance. I recently have been trying to date as well as find answers and potential help for this.

Many women I have dated after have basically never returned calls or anything. Some have even gone on to post about me on social media and poke fun at my issue. My ex-fiancé walked out because she felt I was cheating when I was, in fact, just fearing the pain sex would cause. Does anyone have advice on what to do or if they have similar health issues?

I apologize if this post is in the wrong section @mods

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,099 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Past Member

There has to be a reason for the pain you're experiencing, and the right doctor will find it and hopefully, be able to do something about it. Don't give up! The answer is out there.

Did you explain the problem to your ex-fiance and that you were not cheating? If you did and she walked out anyway, you're better off without her. Not every woman is like the women you have met. Talking about your problems on social media is unconscionable! You don't need women like that in your life. Nobody needs anybody like that in their lives.

I wish you luck in finding the answers you need. You will find them. Keep trying. Everyone on this site has been through awful things, both physically and socially. We're all with you, all the way.

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Puppyluv56

Dave,
You have a unique issue but I am sure there are others on the site that can relate to a similar issue! Not all people are stupid like the girls you have encountered. Until it is you, or someone you love, it is always a joke to shit in a bag! Once you get there, you are grateful there was an option because many of us would not be alive today without it! It would seem that there are many specialists in New York that could help you. I understand you are using the public healthcare system but maybe they could refer you to a specialist that would be willing to take you on for free for the challenge of finding out the cause of your issue! You are a young man with many years to enjoy life so I would certainly push the point with some specialists! Talk to your current doctor and if you find no help there, call the specialist offices! Call the hospitals and ask for a social worker! They all have them and can do a lot of the leg work for you! Don't let it go because the healthcare system is not working for you!
I was a case manager in an oncology practice for many years before I retired and this is what I did for my patients. I dug until I found the solution for them and usually at no cost! Even if there is a cost, set up a payment plan. $5 a month. Whatever you can afford! They will take what they can get sometimes!
Please seek out assistance! You will find something or someone to help if you work at it!
Good luck and please keep us posted!
Puppyluv

Dancingthrough

Hi Dave. I can somewhat relate to what you are feeling. I am a widow of 5 years and would love to find a special someone to spend the rest of my life with, but the men I have met just find every excuse in the book to run the other way when they find out I have an ostomy. BUT I am not giving up hope, and neither should you. As Puppyluv said, you need to find out why you are experiencing so much pain. Keep us posted as we do care.

Bill

Hello Dave. I am so sorry to read about your problems and can ceratinly empathise with your plight. Some time ago I had similar problems with painful erections and even more painful intercourse. I recall the pain being so bad it brought tears to my eyes. Very embarrassing when I was supposed to be enjoying the experience! After much heartsearching, I decided that sexual intercourse was not worth the pain so I gave up on it.  I tried to make it clear to my wife that my abstinance was not because I did not desire her but that the excruciating pain made the experience unfulfilling. After about a year of abstinence, I tentatively tried again, only to find that the problem had resolved itself (without any medical intervention). What a relief!

I'm only sharing this story because I feel that you should not give up hope on this one. I cannot pretend to know what is wrong with you (or me) in these circumstances, but, because of my reluctance to use medical services, what I have found is that many phyisical ailments get better by themselves if the body and mind are given time to rest and heal.

I hope you find a solution to your problems soon.

Best wishes

Bill 

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
dls

Hi Dave and welcome to the right place. We are not doctors (some are), but the huge number of people on this site add up to a tremendous amount of experience. The four posts you received give great advice, as usual. As a woman, I cannot understand your problem, but we can attest to your pain...physical and emotional. It is incomprehensible to me that someone would post intimate details of anything, good or bad, on social media. That's what pornography is for. Know that there are many women out there, but, if I may, get hold of our physical problems before you go on. I've yet to tell any man I have an ostomy (except my priest). And no one needs to know...until they do. Keep us posted, your other symptoms are horrible, as Bill said, maybe quite reversible, or maybe just time will heal. The human body is an amazing thing, it needs far more time to heal than we, in this superfast world of ours, are willing to wait.

dls

I think my hands have been chemo's today...better rest up before I post again. Hope you got the gist.

Peter

I had an ileostomy for 6 months 3 years ago... rectal
cancer... I'm in the medical field... anesthesia... tell me more about your operation... it's hard to know what to say without that information... concerning your health... anyone who would joke about your situation... is immature and self-centered.

NewlifeVictoria

Hi, I'm just reading your in medical field. Can we text? I'm

not sure where to text you besides here. After reading your in Med field, I'm trying to figure a lot out. NewlifeVictoria, message me please. Thank you. Hope you're feeling better after your 6 months. Have a good day.

Morwena

Honestly, anyone who would ridicule a person who has had major surgery to improve the quality of their life isn't worth having in your life. I understand that it's difficult for you to trust someone enough to even think about starting a new relationship, but you will find the right person for you.

Her actions were/are deplorable, but there are many caring, understanding people out there. Please don't let her and her sad little friends "win". You will overcome these problems.

looking forward

Amen to Morwena, I say the same. I had mine for 2 months and am doing okay, but by no means ready for sex.

joe white_

Dave, ask a medical person about the possibility of Peyronie's. I had a problem similar to what you describe. It went away in several months without medical assistance. The curve they talk about, for me it was drastic.

joe white_

Dave PS I have no idea as to whether my problem was related to my ileostomy or not.

warrior

Dave, fear not. Someone out here is going through the same thing. Just be patient. You might wanna start a new thread "For Men Only...." to catch the eye of guys interested. Using a broad title can be misleading and uninteresting to looker-on folks.

You live in the greatest city in the world for hospitals. I see no reason why you can't get help from any of them, but please get some input from guys here first. Prepare yourself. Arm yourself against BS doctor thinking they have the answers. Unless they have the problem themselves, they could not know.

The girls using social media to poke fun of you is really hurtful. One could retaliate. I would consider it. But they must be very young and just immature not knowing how much pain they caused you. If you need ammo to fire back at them, lmk. I can be badass on social media. See how they like it when the tables turn. Stupid, irresponsible "girls" just need a taste of their medicine.

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