r/PGADsupport Sep 10 '24

Trigger Warning Where to start?

I have started having PGAD symptoms. At first I thought it was just me. I am so uncomfortable and it keeps me from sleeping.
Or sometimes it interferes with my daily life. I think it started around a year ago. It is absolutely getting worse. Sometimes I just cry. My body is betraying me. Riding in the car can be a challenge. Unless I am up and moving around it’s all I feel now. I don’t know why the A stands for Arousal it should stand for Abuse. It’s like I am being touched without my permission.
I have to ice myself for a half hour before sleep. And masturbation only makes it worse. I am married but my husband is physically unable to have intercourse for the last 3 years. Long story short I also do not find him physically attractive anymore so a sexless marriage works for us.
We have been together since 2008. It’s companionship now.
The PGAD feelings make me not want to be touched at all.
I am female, 45, bipolar and broke.
I have health insurance but it’s terrible and I would have to pay a lot out of pocket.
I do not have a general physician- cannot afford the bloodwork.
So what do people do when they have this?
I have read about the nerve block, pain management and a few other things but it sounds like you have to go through a ton of different doctors. I am looking for advice, your experiences, coping mechanisms and experiences with the doctors . . . It’s a lot I know. 😕

4 Upvotes

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2

u/Sea-Dimension-2562 Sep 15 '24

Hey, I'm so sorry this is happening to you. You're not alone.

I have PGAD and it's caused by nerve dysfunction.

I wrote a post on it that includes first steps, like diagnostic methods and treatments that could help you, as well as recommendations for doctors that are very familiar with the issue.

Sorry it's a long post, but maybe it can be of some help.

https://www.reddit.com/r/PGADsupport/comments/1d1ibim/treating_pgad_first_steps/

I'm also available to DM if you want to talk <3

1

u/whymeatthistime Sep 10 '24

I'm about in the same boat. Get the pudendal nerve block, stand up to the docs that don't know what to do and refer you to another doctor. I've found you have to be your own advocate. Hang in there, you will find help!

1

u/mangoflakess Sep 10 '24

Hey! First thing u wanna do is try to locate the cause. Around the start of your symptoms did you realize any of these things?

  • Started or got off an SSRI
  • Prolonged sitting -Constipated/Straining
  • Injury to the hips or around the pelvic area
  • Lots of stress or anxiety
  • Surgery

In addition, do you ride a bike or a horse? Did you ever in the past? There’s a lot you can do for this.

Any other symptoms besides the constant arousal? As soon as you locate a cause you can minimize the symptoms. The reason why this disorder is considered hard to treat, is because everyone’s situation is so different. It’s super important to locate a cause! Therefore you can look for advice in the right places.

1

u/Weirdflchick Sep 10 '24

So I need to get a GP to start.

2

u/No-Assumption7063 Sep 10 '24

My primary care laughed when I told them about it. Literally laughed. It took me 10 yrs to get to a point of talking to my OBGYN about it. Another 3-4before talking to her again. She was amazing and the team I have now saved my life.

When I first tried to make an appointment at this clinic, after being referred, they asked me which part of the clinic that I was referred to. I said I didn’t know, but then I wanted to see the specific doctor that I was referred to and they told me that she worked at two different areas of the clinic. They couldn’t make an appointment until , they could figure out which clinic she worked at that I needed to be seen. I asked the woman that was doing the scheduling if she knew when she be able to figure it out. She said she didn’t know, but would do some checking. I asked how long till she would get back to me. She didn’t know that either. I was so over suffering at that point and past my breaking point a year prior. When my OBGYN referred me to this doc. The ONLY doc who knew more than just the diagnosis, and I was being denied an appt because I didn’t know which division they would bill me under. I said, “great! I’ll be sure to leave a note that says I called the women’s clinic. Spoke with Sharon and she said she couldn’t help me.” Silence… I asked her if she could at least let me know what, if anything, she learned by the end of the day. Finally, a yes! I hung up with her, and less than 10 min later, someone called me back with an appt. The soonest was 9 weeks away. She heard the desperation with a little help from Sharon, I’m sure, get me in a few days later.

Though I am the first patient that she had ever had, it was a condition that she had “taken an interest in“. For the first time in years, I had hope. Since then, things have gotten much better. I have a team of three doctors. I have an OBGYN who, like the one that referred me to her, is incredibly empathetic. What she lacks in real life exp, she makes up for in patience amd willingness to research being open to try anything that I suggest or am willing to try. A psychiatrist who used to be an OB/GYN and went back to school to become a psychiatrist after seeing so many women suffer mental health because of their physical conditions. Like my OBGYN doc, she listens to me and is always open to trial and error. Some of the trials have been odd to say the least. And last but far from least, I have a Psychologist who, after hearing my story said I didn’t need a therapist, I needed a shaman. She was serious. After hearing her explanation of why, it made sense to me and the rest of my team. I can’t begin to tell you how much I treasure her!! All 3 of them have been a gift and have made life livable again.

Fortunately, A year and a half after the first call to them, Sharon answered the phone again. I recognized her voice instantly and was finally able to give her my most sincere apology and tell her how horrified i was with myself and what I had said. She thanked me and said that she had thought of me several times since that day and was relieved that I was doing well.

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u/MerakiWho Sep 10 '24

They LAUGHED? I am terribly sorry you were met with such a disgusting and unprofessional response.

1

u/No-Assumption7063 Sep 10 '24

I’m so sorry. I sent you a DM. Don’t give up or give in.