Severe Pelvic and Anal Pain

[LNLPANDORAS]

I am a 68 year old, once very active female who started having anal, rectal, vaginal, clitoris pain in April of 2021. Since that time I have had 15 months of pelvic floor therapy, a colonoscopy, Defecogram X-Ray and MRI, Pelvic ultrasound, several trigger point injections, several prescription meds, several different types of suppositories, creams, E Stem, TENS, 4 different nerve blocks, etc. I have seen 17 different types of doctors. I have been told that I have Hypertonic Pelvic Floor Dysfunction. Nothing has helped and the pain has gotten debilitating. Does anyone know of or had any treatment that has worked. I am at the end of my rope and feel like I am losing my mind. PLEASE SHARE!!!

[kalecolbe12]

Only the ng that has really helped me with all this has been low dose nerve pain meds.... I am on a super low dose Cymbalta during the day and a very low dose of Gabapentin at night and it's been life-changing I've tried all the things you've mentioned although I will stay pelvic floor therapy really helped me to calm down and a lot of it stems from anxiety and also the muscle relaxers help. I still do my stretches and breathing everyday.... Also looking to some of the mind body pain apps

[LNLPANDORAS in reply to kalecolbe12]

Thanks for your reply. I also take Cymbalta and Gabapentin as well as Baclofen. Being a type A personality person, the struggle with no firm diagnosis and no firm treatment is so hard.

[kalecolbe12 in reply to LNLPANDORAS]

I am also 68 and I wanted to add to my answer earlier that the app I was talking about was the curable app you might want to try it for free...it really has helped me too. I talked to my pelvic pain doctor and they said it takes a lot of modalities to help this pain and you have to take toxic people and stress out of your life as much as you can and meditation will help but I was wondering if you had a ganglion impar block or tried a pain pump? Also have you ever tried hormone therapy ?

[LNLPANDORAS in reply to kalecolbe12]

Thanks for your I info!

Yes to the Ganglion Impar Block and no to the hormone therapy. On the pain pump,the pain Dr talked to me about the pain pump today while doing a Superior Hypogastric Nerve Block. It feels neverending!

[Grandmommy in reply to kalecolbe12]

Could you direct me to what you use on the Curable app? I have a membership, but let myself be overwhelmed and not sure what would best help me with my pelvic pain. Thank-you!

[hoopwhirl2007 in reply to LNLPANDORAS]

Iam also a 68 year old female. Been suffering with Pudendal Nerve Entrapment for nearly 8 years now. I have tried everything you mention but was wondering about having another nerve block injection to see if it works this time. Last time it only worked for 8 hours. In the meantime I have just had my 2nd osteo appointment, together with stretching exercises, so I'll see how that goes. Although I saw osteo hoping she could help with my PNE, she has found that I have really bad bursitis in both hips so she's dealing with that first. I have not stopped trying everything I can to get rid of pain but so far, to no avail. I came off amiltryptline because if the dementia risk attached and my pain has since got worse . I feel for you and wish you good luck xxx

[AuntieH in reply to LNLPANDORAS]

All of us dealing with this kind of chronic pain must be Christians cuz not many people could deal with this kind of pain every day without overdosing on some kind of narcotics. Kudos to all of you! ❤

[anna1234567 in reply to kalecolbe12]

May I ask what you consider a low dose? Also did you start out on both together at the same time? Thank you.

[kalecolbe12 in reply to anna1234567]

No I started the 300 Gabapentin at bedtime a year before I started the Cymbalta because I was getting anxiety from the covid situation and it was exacerbating my pain plus there was still some burning but not as much as before so the doctor thought it would help my anxiety and take the burning pain down which indeed it did and I've been on it about 15 months now only 30 mg a day has worked for me

[anna1234567 in reply to kalecolbe12]

thank you. For me it sounds interesting because I reacted severely on pregabalin as to a point I didn’t want to live anymore. A combination of 2 might be an option instead of just a single one. Both have been suggested, but due to my history I’m still afraid to try them.

[PN21 in reply to kalecolbe12]

Hi

What do you mean by ng please?

[Nursepb]

I too take cymbalta, baclofen vaginal suppositories when it is bad . Also PEA and Alpha Lipoic acid . I was under tremendous stress when this dealing with my dad’s estate and a false mold report. My MRI shows Tarlov Cyst at S2, S3. I also have a pelvic mesh . I too don’t like not knowing the exact cause and how to fix it and not just treat it .

[LNLPANDORAS in reply to Nursepb]

Thank you for your reply. I too have had two major deaths and many stressors that may have certainly added to this happening to me. I have just been at such a list as to what was happening to me and why. Until now, I've never even heard of any of the seemingly many different explanation and treatments for this type pain.

[Skye22]

I was diagnosed with levator Ani syndrome and what works for me is pelvic floor trigger point therapy with my specialist physio. I get Botox injections into levator muscles every 3mths and take antispasmodics medication and ammitryptiline for pain. It took a long time to find a combination of therapies and meds that worked for me. I hope you can find a treatment that works for you.

[pizon]

I have Pudendal Neuralgia and was misdiagnosed for over a year and a half…I tried over 8 different nerve med all with some sort of reaction…I was on my couch for most of this tim…trigger point release and therapy did help but the most help I got was thru yoga Your PaceYoga by Dustine Miller and a book by Amie Stien Healing Pelvic Pain…this along with working with an herbalist I take valerian root and hops daily usually at bed time however if I am sitting for longer periods of time (something I was unable to do) I will take it up to 3 times a day..I truly hope this helps you because it is the only thing that gave me my life back…there are things I can not do that I could before this horrid condition …but I am able to have a life that is mostly pain fee as long as I do not do things that irritate the never…I truly hope this helps

[LNLPANDORAS in reply to pizon]

Thank you so much and I truly wish you the best!!!!No one should have to live like this for even one minute!

[RobertVerde]

here is a site that can give you lots of information: pudendalhope.info/ - I also recommend you get this book - A Headache In The Pelvis" It gave me an idea of how to go about making muyself better - good luck!

[LNLPANDORAS in reply to RobertVerde]

Thanks for the info and best wishes!

[Grandmommy]

I am also 68 and have suffered with pudendal and pelvic pain for five years. I currently go to Pelvic PT and see a pain doctor monthly. The pain Dr prescribes 2 different compounds which are helpful, and he prescribes me Gabapentin, a muscle relaxer I use sometimes at bedtime and Hydrocodone which for whatever reason helps me on some days. I have a TENS unit, have tried Acupuncture, Chiropractor, Prolotherapy, Pudendal Block, Ganglion Impar Block, Vaginal suppositories etc. I had painful Sciatic pain, but my present PT has eliminated that pain-yeah! As others have said, stress makes a difference with my pain. I am in pain daily, some days worse than others. I pray for a cure for all of us.

[LNLPANDORAS]

I too am praying for all who are suffering with these terrible issues.

[downtowntiger]

Botox in my pelvic floor muscles helped tremendously.

[MissStar]

You might find help through wholewoman.com or humangarage.net

I don't know anything about your condition/s but Whole Woman has lots of resources for pelvic issues, and Human Garage works with fascia and that might be source of your pain, they have lots of free resources (exercises) so might be worth a try? best of luck to you, hope you find relief and healing

[Karen1954]

hi! U and I r exactly the same with age and treatments!!!! I don’t understand this stuff!!!! Why can’t something work? I saw my colorectal about 5 weeks ago and he said my sphincter pain and spasm is the worst he’s ever seen so he suggested doing more Botox which we did!!! It didn’t help much but I got to a point where I could push through. Then two weeks ago it got ridiculously worse and I’m at my ropes end!!!! I am doing a pain pump on Monday so if that doesn’t work I don’t know what I’ll do!!!! I have been through SO much it’s insane!!!!! Why r we all going through this horrific pain? No one can live like this!!!!!! I miss my kids and grandkids and being normal!!!!! I’m pretty much lost! My ibs started in 2012 and all this pain is from that and stress!!! I’ve thought of doing the wise Anderson protocol but pretty expensive and who knows if it will work but if the pain pump doesn’t work I might!!!! R u worse in the morning? I feel like I’m being ripped in half or like my pelvic floor is in a vice!!!!! I hope we can keep in contact so we can help each other!!! Please take care!!!!!

[Boingi200]

I have the same 3 years pudendal blocks spine epidural, Periformis hips blicks ganglion impar. I am seeing a orthopedic specialist next month.

Insist on an MRI

Wishing you well hopefully free of the delibitating pain. I feel for u

Nothing has worked for me

[Virginiapn]

I had same thing. Lasted 6 years. Tried every drug, nerve blocks, PT, acupuncture, sitting cushions. Had fancy T3 mri at Hopkins. No smoking gun. Had coil embolization of pelvic veins which were a mess. Nothing worked. Best drug was tramadol by far. This all probably from long distance biking. Then it all went away for 7 years. Then it came back 15 months ago. Heartbreaking. No apparent reason. My best hope was an rf nerve block of ganglion impar. Didn’t work. Then a Botox shot to same. Did nothing. Now I take 1800mg gabapentin and 50 mg tramadol a day. I have some good days, maybe 40% of time. No pain. But then it comes back. No risky activities. Maybe barametric pressure? Maybe stress? If you haven’t had the rf block of ganglion impar try it. Not a bad procedure. Local only. 15 minutes. Hang in there! You are not alone in this fight. Dave

[LNLPANDORAS in reply to Virginiapn]

Hi,

Wanted to respond since it has been awhile since I have posted. Unfortunately, no changes. Still miserable every day. Worse as the day progresses. Have had Botox injections. No help. More trigger point injections in various nerves. No help. Latest news is my urogynecologist says she knows of NOTHING else other than to try to try a sachrel pain modulator. I haven't seen the doctor that does this procedure this yet, but will in March. Has it helped anyone? Until then Tramadol 300 mg, 60 mg Duoxetine twice a day, Flexeril, ice , heat, TENS unit and Pelvic Floor PT a once week. So very tired of the process but will try this last procedure I guess. So dejected