update

[chrissy]

Dear all
Thought I would update anyone who is interested. I went to london last week and had a Gad scan at the institute of sport exercise and health. It showed inflammation in the pudendal area as well as odoema of the bone marrow around the sacro illiac joints.
Dr Baranowski did bilateral pudendal nerve block under sedation on me. After the area felt numb for several hours. Currently I am experiencing a slight flare up but nothing too bad. The steroids are expected to start to help soon. I am going for repeat injections in two weeks extended to the sacroiliac area.
I will let you know how it goes and if I am able to reduce my meds.
Chrissy

[janetm2]

Hi Chrissy,
Look forward to hearing the outcome. Hope you get good relief from the injections amd can lower the meds. I was so happy when I got rid of some of my meds.
Janet

[chrissy]

Thank you. So far the nerve block has done nothing but give me a slight flare up of pain in my coccyx. Very dissapointing. Was hoping for a light at the end of the tunnel. I am only 34 and take 9 meds a day and they really take a toll on me (both looks and mentally)

[janetm2]

Chrissy,
Sorry to hear the blocks are not doing more. I do fell for those like, younger, and having to deal with this condition and all the meds with the effects. It was tough getting the foot pain when I was 26 but was glad PNE came later in my forties. I was able to get rid of the meds that had mental issues but still plenty of things to deal with but grateful for the few updates since surgery. Keep trying things and some treatment may suddenly be the one to make it at least a little better. You are in my thoughts. Take Care.
Janet

[Violet M]

i Chrissy,

Sorry to hear you are having a flare-up after the injections. I had flare-ups after nerve blocks too and I understand how disappointing it can be but it's not unusual. If you want more information on the efficacy of nerve blocks you might want to read the article I just wrote for our most recent newsletter. You can access the newsletter from the homepage at pudendalhope.org.

Best,

Violet

[chrissy]

Thank you for your kind wishes.
Violet, thanks for pointing me to your article it has given me losts of information.
I did go numb after the procedure for a few hours. The pain level was at 0 during this time although I felt weirdly swollen.
So does this indicate that I more than likely have pn?
I wonder if the swelling of the bone marrow is related to pn or a separate issue...
I almost don't want to have my second injection especially after reading the horror stories on here!

[Violet M]

Chrissy, are you an athlete? Just wondering what might have caused the bone marrow edema because if you are an athlete and there is injury to the SI joint area that could be a contributing factor in your PN problems. My PN problems tend to flare-up when my SI joints and ligaments are flared up leading to pelvic instability and misalignment.

Well if the pain was gone for several hours after the pudendal nerve block that would be considered likely diagnositic of pudendal neuralgia. Did they use steroids in the injection and did you get any long-term relief? Permanent problems after nerve blocks are pretty rare but since they do happen I am not a big fan of nerve blocks unless they are absolutely necessary -- for instance if nothing else has helped and you are seriously considering surgery.

Violet

[chrissy]

No I am far from an athlete ha! I am not overweight or anything but I haven't exercised since I had my baby 19 months ago due to this bloody pain!
The coccyx pain only started a year after his birth though which is so strange. It was the vaginal pain at first. Just can't figure it out its so frustrating. In my head I think this whole thing was caused by the severe urine retention and distended bladder that I had after the birth but the doctors don't seem to want to say

[Violet M]

Chrissy, I don't know for sure but it might be worth having the sacro-iliac ligaments and SI joints checked out a bit more even though you aren't an athlete. I've had prolotherapy into those areas and it was helpful. It's best if you have it in conjunction with physiotherapy or manual therapy.

Violet