Pelvic pain only when lying down

[Dchristine]

I'm new to this site. It's really great. I've been suffering with chronic pelvic pain for 6 years. My dr said I have pelvic congestion syndrome after performing a laparoscopy. Unfortunately my insurance changed and my new dr said hysterectomy will fix it. So I had that, no help at all and actually gave me a new sharp, shooting pain (dr says nerve problems), which even caused me to pass out on one occasion. Good times 😕

When I look up pelvic congestive syndrome, it says that standing causes pain and lying down relieves it. I have the opposite; I'm painfree all day, and then at night the pain sets in about 20 minutes lying down and is severe. I spend a lot of my nights sleeping sitting up. Does anyone else have this problem of being sympathetic from lying down?

[Rocky68]

I have spasms in perineum when lying down. I take 300 mg of Lyrica and ,5 mg of Clonazepam just to sleep at night.

I was diagnosed with Pudental Neuralgia but think that is catch all when nothing specific can be identified.

I don't have pelvic pain but do have pressure around rectal area and the muscle spasms really only occur when I lay down. I am starting to have pain in lower back and sacrum but two MRIs showed no structural problem I take 50 mg of Tramadol for pain.

I never took meds before but after six years of problems I decided to treat symptoms and be as active as possible. Rocky68

[Dchristine in reply to Rocky68]

Thank you for the reply. I'm taking gabapentin and nucynta for the pain at night. Unfortunately it often stops working at 3 or 4 in the morning so I have to sit up to sleep another couple of hours. My pain dr prescribed lyrica but my insurance rejected it. I'm wondering if I should buy it anyways. I'm going to look up pudental neuralgia. Thanks.

[Rocky68 in reply to Dchristine]

Lyrica is very expensive. I talked with pain management Dr and explained buying Lyrica wld throw me into Medicare "donut hole.

I live in US so I'm not sure you know what that means. Once you are in donut hole you pay 45% cost of drug which costs about $600 a month thru my insurance

Lyrica will be under patent until 2018 my Dr provides me samples

I was on Gabapentin 1800 mgs and it did not help Lyrica stopped inner thigh burning and tightening of backside I still have problems with pressure and some twitching

I have had Ganglion Impar shot as well as two bilateral Pudental nerve blocks no good results from either

i also went to Physiotherapist for nine weeks some people find relief with this but did not help me. Orthoprdic Dr says I have Levator Ani Syndrome and positional Pudental Neuralgia This problem came from no where I have always been active and in good health Keep in touch and let me know if you find anything helpful Rocky68

[68Brina in reply to Rocky68]

Ask your doctor about Topamax that may help. Lyrica is expensive and you can obtain a coupon from their website that may help, at times there are restrictions for those on Medicare, you would have to check and see.

[68Brina in reply to Rocky68]

It appears that you do have the symptoms of Pundendal Neuralgia. MRI's do not necessarily show any injuries but if you have a PN injection and your pain diminishes most likely you do have PN or PNE. Consult with a neurosurgeon or pain management specialist.

[68Brina]

It appears that you may have pudendal nerve entrapment and you should get tested for it. Do not let your doctor tell you any differently. If he denies it then you need to see a spine specialist and/or a neurosurgeon

[Dchristine]

Thank you for the reply. I'm definitely going to do some research on the pudendal nerve. I've heard Topamax has a lot of bad side effects. Have you taken it? How was your experience?

[PeterG182]

Hi.. Did you find any long term solutions to your problem?