Please consider seeing a pelvic pain expert if you haven’t!! (Recovery Story)
26F, symptoms started in February and I was going crazy. Everything I read made me think this was permanent and I was so terrified. Multiple gynecologists had no clue what was going on and just dismissed me after figuring out my life wasn’t in danger (“it’s hormonal, get on the pill, give it a few months to settle”).
The one person who confidently said she knew what this was and had seen it before was my pelvic PT, who said it was 100% possible for it to go away. I finally went to see a pelvic pain expert she recommended and I’m so happy I did! He did the most thorough exam so far and figured out the issue was the dorsal branch of my pudendal nerve, which got irritated during intercourse because of my pelvic floor tightness and internal muscle spams. If you’re in the NYC area, I cannot recommend Dr Reutter enough!!
It’s been a few weeks of pelvic PT plus the medicine he recommended (oral pregabalin + valium and baclofan vaginal suppositories) and I feel so much better. Before, I had flareups that lasted a week nonstop, became intermittent, then kind of faded before coming back full force. Now I haven’t had a flareup like that in weeks; it comes back for a few hours here and there, but it’s significantly more reduced in intensity and always goes away after a bit. He warned me it would be this way and that it would take time for the nerves to settle/for it to fully go away, but the improvement is so noticeable compared to a month ago when I started this treatment.
Both the pelvic pain doctor and my pelvic PT said many women do not get relief because gynecologists don’t take them seriously and often don’t even know about PGAD/its causes, which made me feel so seen. My pelvic PT also said many women end up being seen by unqualified “pelvic PTs” who actually just took one class on pelvic health, so they don’t know about PGAD and make it worse by telling patients to strengthen their pelvic floor muscles rather than downtraining. If you haven’t tried a good pelvic PT and/or a pelvic pain expert, please consider it! It changed the game for me.
I understand some people here have struggled for years without relief from any of these methods, but if your symptoms just started and/or if you haven’t tried this, it’s worth a shot! If it helps anyone, I’m also happy to talk about the symptom management plan my care team (therapist, PT, and pain doctor) came up with while we wait for this to settle. I know I got EXTREMELY lucky to have found such qualified people, so I’m happy to share any resources I got!