Painful Female Orgasms=Isolation HELP!

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Annie1024
Posts: 1
Joined: Fri Jan 03, 2014 4:36 am

Painful Female Orgasms=Isolation HELP!

Post by Annie1024 »

It's been five years since they started. It doesn't matter if I'm alone, or with a partner. As soon as I orgasm, my lower abdomen feels like hot knives are being shoved into it. The pains last about five to ten minutes. I've charted them to begin after ovulation and as the time for my period comes closer, the pains come anytime. Going to the restroom has become an anxious event. I usually take about 5-10 minutes trying to breath through the pains. I've never had a child. During a laparoscopy, my Dr removed a few spots of endometriosis from the ligaments of my uterus. With confidence this was causing my pain, she declared me cured. I was not. A year after the laparoscopy, I am still in pain. I am 32 years old and isolation is a part of my everyday life. The mood swings and embarrassment keep me from being in a relationships with decent men. I've pushed away the majority of my friends out of pure jealousy. I feel like a freak of nature. I've seen many drs and they all tell me to go see my gyno. She currently wants to put me into medically induced menopause, but can't tell me why my pain exists. Before the pains started, I was experiencing extreme pain in my tail bone. After an MRI, it was noticed that my tail bone sticks into my pelvis at a 90 degree angle. Does anyone know what is wrong with me? I can't talk to my mother. Sex is taboo. My sisters have kids, husbands, and lives. They just say, "I don't know what to tell you." I can't take this isolation anymore.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Painful Female Orgasms=Isolation HELP!

Post by nyt »

Annie1024, I am so sorry to hear of your problems. Just a couple of thoughts. Finding a good doctor is really key. You might want to consider finding a doctor that specializes in pelvic pain. If you go to the home page of this forum they list doctors that specialize in PN/PNE but many of them specialize in pelvic pain. You can also find good pelvic pain specialists on "The International Pelvic Pain Society" website. http://www.pelvicpain.org/

An evaluation by a good pelvic PT might give some insight also. When we are in pain we hold everything tight especially our pelvic floor muscles. I'm not saying that this is the cause of your pain but it might be contributing to some of it. Again, on the home page of this forum you can find pelvic PT specialists.

Considering your tailbone is at a 90 degree angle a visit to a chiropractor might be of help. A pelvic floor PT would also be able to evaluate this but not sure if they would be able to adjust your tailbone.

Isolating yourself from friends and family is not good. You really need their support. That doesn't mean you need to discuss what is going on but just having them to help take your mind of things is important. It is really difficult not to talk about the physical difficulties we have. We are all there but it is key not to isolate yourself from any support and people tend to shy away when we always talk about our pain problems. It is just human nature. I decided early on in this journey that unless it was a doctor if someone asked me how I was doing I would just say "ok" no matter how bad I felt. I certainly haven't been perfect but I work hard not to unload on friends and family my pain troubles esp. because most of this is in areas that are quite personal and make people uncomfortable.

There are some really good books out there on pelvic pain such as "Headache in the Pelvis" that might be give some suggestions. Also, general books on pain I have found have good tidbits to help deal with the changes that come with pain.

There is Hope that you will get this figured out an under control. Don't give up and keep seeking. You will find the help you need.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Painful Female Orgasms=Isolation HELP!

Post by Lernica »

100% agreement with NYT's suggestions. A tight pelvic floor can pull your tailbone forward as you have described. Some chiropractors do coccyx adjustments, and this is worth exploring (btw this is done internally via the rectum and is very painful, at least it was for me) but if the reason for the tailbone curve is a tight pelvic floor, it will revert to its position even after an adjustment. I hope that you can find a pelvic PT near you who can assess your pelvic floor as that is the best place to begin your search to get better.

Having found this forum you will by now have discovered that you are not alone!!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Roger
Posts: 40
Joined: Fri Nov 29, 2013 4:10 pm

Re: Painful Female Orgasms=Isolation HELP!

Post by Roger »

It sounds very PN related. As a mere man I get the intense burn after orgasm too, so I understand a little of what you feel.

But the question with this is which came first? Has the muscle irritated the nerve or has the nerve irritated the muscles? You may never know the true cause but hopefully you can work a way through it :)

Might also be worth finding a very good Oesteopath and getting your SIJ alignment checked incase that is a closing down of the Alcocks canal in your pelvis and thus this squeezing the PN with a muscle or against the pelvis causing the PN to flare.
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: Painful Female Orgasms=Isolation HELP!

Post by flyer28 »

Roger, if I might ask you, do you have this burning/exacerbation immediately after orgasm?
Because I had it delayed, lets say 24 hours or more after ejaculation....in the beginning. This delayed pain is the hallmark of nerve irritation. It took some time to recognize this pattern, but it was always the same - sex and then 1-2 days later pain, tingling, aggravation...Right after sex I was completely ok. but 2 days later....
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
David257
Posts: 1
Joined: Wed Jan 15, 2014 9:23 pm

Re: Painful Female Orgasms=Isolation HELP!

Post by David257 »

Hi annie

I have pain to left of vagina, reading up dorsal nerve to clitoris, this would involve orgasm nerve. I have less could i say explosive orgasms. Mine is such a long story i am too tired with meds to explain. You are not a freak just wanting to have normal sex, as we all do, and experiencing this difficulty. Have you tried lyrica.
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