Pudendual nerve pain, interstitial cystitis and?

[STUBBORNGIRL7368]

Hi everyone, I really need ur help as I am feeling desperate for answers and relief. 18 months ago I had extreme bladder and kidney infection . 9 plus antibiotics and almost 6 months later to clear. Extreme pain/pressure in vagina perineurium and rectum. Pain never cleared, has only gotten worse with time. Burning in left side under ribs w spasms clear to groin, pain in left low back and down back of buttock and leg. Pain radiates in front to knee. I had a very odd sensation in bladder that felt literally like I was electrocuted and have had this level of pain since then. Was diagnosed w initial cystitis and a host of back problems. I have had nerve ablattion in my back, 8 epidurals and injections. I only get about two hours relief from each procedure and pain returns. I literally feel like I am in childbirth a great portion of my day, also feels like I am sitting on a rock. Most of the vaginal pressure seems to stay on one side, oddly enough. I started seeing a pelvic floor specialist today and she said there is pudendual nerve involvement. I am desperate for any amount of pain relief. Can the interstitial cystitis cause this level of pain? Literally, I would amputate a limb to get some relief. I have always been told i have high pain tolerance but obviosly with this, my tolerance is not there. I should add that I am a below knee amputee and she said my pelvis is really tilted down on one side and up on the other.literally when I woke up from my amputation is not even as much pain as I experience now. I am 48 years old, have had a full hysterectomy 15 years ago and have never been on any hormones . is there a specific kind of doctor I should seek treatment with? I live in Washington united States. Have been put on every med for the cystitis that they have according to urologist. The only one that has helped at all is mybetriq. Urologist wanted to put in a spinal cord stimulator, but I have held off, as I have felt it was something more than cystitis. Please, any advice I would cherish. I am so sorry that all of u suffer so greatly.

I take fentyl patch 75 micrograms for pain and 6 htdrocodeine 7.5 per day for pain and I can't get any relief. Pain gets worse as day progresses and is the best upon waking. Thank u all for responding

[RLH356]

I'm so sorry you have been through so much. I was diagnosed with pudendal neuralgia in December of 2014 and had bilateral neuromodulation implant surgery done in April of 2015 which has given me quite a bit of relief and would encourage you to consider the trial. In December of 2016 I thought I had a UTI, it felt like glass in my bladder. It wasn't a UTI, but was was diagnosed in April of this year with Interstial Cystitis, which yes, can be extremely painful as well. I am finding following the IC friendly diet helps manage the pain along with catheter instilled medications into my bladder twice a week that are prescribed by my doctor. Unfortunately, neither of these are a "one size fits all" disease. What might work for me, might not work for you. You have to find a caring, skilled, knowledgeable team of doctors willing to work together. Your primary caregiver, Pelvic Floor therapist, Pain Management, Urologist, etc. I travel 7 hours to South Dakota to see my doctor because there is no one in my area. You can get my doctor's information in my prior posts if you are interested. There is also a doctor in Michigan that trained my doctor that I listed as well. They place the leads of the stimulator next to the pudendal nerve which has been more successful than in the sacral area. If you have any questions, I would be happy to try and help. I wish you the best on your journey.

[STUBBORNGIRL7368 in reply to RLH356]

Absolutely bless u for the reply! I so appreciate u telling me ur story. As much as I hate to know of another person being in such pain, it brings comfort to me to know I am not on this journey alone. I will check ur posts and try to read thru them, then probably will ask u a bunch of questions. I can't thank u enough for taking the time to read thru my lengthy post and taking the time out if ur day and posting a reply. Have a wonderful evening

[Alaine1 Administrator]

Hi,

I'm sorry to hear you are suffering, I am out at the moment but I will reply to you in full later on when I get home

[STUBBORNGIRL7368 in reply to Alaine1]

Thank u so very much

[Chica1943]

I regret that we all have to meet this way, but welcome. You will caring and supportive members here.

1. It's not unusual to be diagnosed with IC when a Dr doesn't know it's pudental nerve. I was. Nothing helped that I did for UC

2. The pain in your flank area is concerning. Did your Dr do blood work to check on your kidney function? Please ask for one. I found out I had developed stage 3 kidney disease due to the numerous no of MRIs and CAT scans. It is the contrast dye that hurts the kidneys when you have so many.

3. Personally, I do not believe the 7.5 mg hydrocodone is high enough. I'm on 10/325 and that isn't strong enough. My pain mg dr just put me on nucynta ER. It is an extended release pain Med. He is hoping that keeping a steady amount of pain Med I'm my system, it may allow for me to not have to take the hydrocodone as much.... every 4 hours.

4. I wish I could use the spinal stimulator but I can't because I have a chronic infection in my pelvis which cannot be removed by surgery because surgery is too complicated and risky.

I would like to mention that there is a newer wireless neuromodulator on the market. It is called STIMWAVE. I asked my pain mg Dr about it, but I'm not a candidate for it either because of the pelvic infection.

At least you are seeing someone that knows it is being caused by pudental nerve.

No one except those of us who have pudental nerve pain can understand how bad it is. Once had to learn that I am quite limited in things I can do and try to avoid those activities that cause the pain to be worse. I cannot sit for long periods of time or I will be in a horrible flare for a week or two. And at that I still have to use a cushion with the inside oval cut out si There is no pressure on my bottom.

One last comment and each of you will need to do your own research and come to your own decision. The pain mg Dr wants me to have épidural injections. I told him I wanted to research first. My findings were not good. The risks are too high. They were never cleared by the FDA to be used for pain in the back or neck.

Please keep us posted. We are all here to help.

[STUBBORNGIRL7368 in reply to Chica1943]

Can u tell me where they proposed to do the epidurals? R they in ur back or in the perineal area? Thank u in advance for ur reply

[Chica1943 in reply to STUBBORNGIRL7368]

He said injections would be done in lower back.

[Antheaanne]

Desperate,barely covers it!!