Health Organization for Pudendal Education

Well i walked for 30 minutes on Wednesday, was in the pool for 30 minutes on Thursday & Friday so now i feel like i can sleep for 3 days. Wwweeee. It taks a lot out of you, plus where im staying at my brothers house i have to go up & down stairs so many time during the day and that kills me the most. My pelvic pain doctor said to avoid stairs if possible but there just not time where i can avoid them. Can anyone tell me when or how they knew it was time to ease their way into sitting? I dont want to force my self but i dont know when i should slowly start easing myself into it. Its uncomfortable to sit so any advice? How is everyone eles doing out there? Good i hope. Have a great day.

Hi Christine
I am so glad you were able to get into the pool! Wonderful! Remember .... Only water walking and gentle flutter kicking or you could get a flare. As per the stairs.... I wasn't bilateral so I was given different instructions from Dr Hibner with going up and down stairs so maybe Karyn can help you with that question. Also with sitting, I still have pain when I sit, so I sit on my cushion for short periods of time and then ease up when I start to feel pain. I also still stand when I eat. I just can't get comfortable enough to sit at a table for long periods of time. Or I sit on my couch on a thick quilt and eat with a tv table while my family sits at the dining room table. I find my pain increasing later in the day. Are you taking anything for pain?

Take care

Lara

Yes i was taking Lyrica, then they put me on Gabapentin but once i reached 3200 mg a day i started to fall asleep plus was putting on a lot of weight so they now have me on Topamax plus pain meds. I also take muscle relaxers as needed. Has anyone seen Dr. Miller in Minnesotta that took the place of Dr. Antolak? My file is going there so maybe i can talk to the doctor over the phone to get some guidence but i dont know anything about this doctor. Any advise would be great if anyone knows anything. Thanks everyone.

wow that is really so informative thread thanks for sharing that with us.
Disability insurance in Louisiana

Your Welcome for me sharing, that's why we are on here. Honestly I'm ready just to give up. I know I shouldn't say that but after all I've been through I see no light at the end of my tunnel. I know many on here have had it just as bad if not worse but my body is so tired all the time and with my L4/L5 killing me and pain going into my right hip it has slowed me down from trying to recovery from surgery. I cant get any medical help as I need a spine specialist but there are none who take state Medicaid and I cant get my nerve blocks any more as no doctor takes this insurance either. I cant get better without medical treatment. I don't see a good ending in site. Bless everyone on here and I hope you all are up and dancing the night away soon:}

Hi Christine
I know how you feel..... Don't give up. I know it's hard. I am in the the same place as you post operatively. Can I ask what pain meds you are prescribed? Maybe your dose isn't high enough? I am also prescribed Topamax as well... 200 mg. I am on dilaudid 9mg 3x a day and tramadol 200 mg once a day. This combo has been helping but it has taken me a while to get a good combination going. I have been working with my pain doctor trying to find meds that help. I also use vaginal suppositories (Valium and baclofen) twice a day and they help tremendously for the muscle spasms. Do you have assistance for your prescriptions? Every month will get easier Christine. Hang in there..... I will be praying for you.

Lara

I'm on 50mg of Topamax which hopefully will increase soon as I was on 3200mg of gabap., valium, talwin for pain, Lexapro for depression. That needs to increase too. It's looking like I'm going to have to go home since I can't get any medical coverage here in Va. We have one more avenue to try before I go back. It will be hard with no family to help and give support but not much of a choice. I hope everyone is doing well & are keeping their heads up high, that's the hardest part for me, depression is as hard to beat in this as much as the healing. Good everyone

Hi Christine,

Healing from PNE is a very long road and can be daunting at times. It might be helpful to be evaluated and treated by a PNE knowledgeable PT if you can find one who takes your insurance.

Violet

I can't find one because I don't have insurance yet here in Va, I have it in Ky but not here. If I don't get on here I will go back home and find a physical therapist. Violet I would like to ask you and Amanda and the others ( I believe I've asked you this before) but I know I have so many years in front of me to recover and also reliaze I may never recover. I've spoke to doctors, I'm on anti-depressants, with family, etc but sometimes it's not enough to fight the depression. I'm afraid it is winning me over, I pray for the strength but sometimes I pray not to wake up. Depression is winning and if you all could let me know anything else to think to do please let me know.
God bless everyone, ha e a good night

Christine,

I feel the same as you do. I wish I knew the answer for you, me, and all of us. Please know that I am sending good thoughts your way.

Sincerely,
Stephanies