Need diagnosis for my pelvic pain.

[EffieT]

Hello! I I'm new here. I have had pelvic pain for almost 18 months. Seen all kinds of specialists but no one was able to diagnose me. I go to pelvic floor therapy which does not help. I would like to know what is causing the pain so I can be treated accordingly. Is it Pudendal nerve, or muscle spasms? I live in Toronto, Canada. Does anyone know who could give me a diagnosis. I'd be sooo grateful!

[Konagirl60]

Dr. Peng at Mt. Sinai Hospital.

[EffieT in reply to Konagirl60]

Thank you so much. I will definitely check him out.

[Moon_maiden]

Hi, have you or any specialist considered endometriosis? Endo can be really painful. I’ve also had a recent diagnosis for Lichen Sclerosus, this can cause pain.

Hope you find someone soon.

[AuntieH]

Hi Effie, can you tell us where exactly your pain is and what caused it, like an operation or injury? There are lots of us with pelvic pain, but we could be more helpful if we knew where your pain is and what caused it or if it just came out of the blue. Take care and best wishes for your recovery.

[EffieT in reply to AuntieH]

Thank you for your response. I am so touched by al these responses of help.

I have pain in my perineum and anal area, sometimes in the vulvar area. It is a raw, burning type of pain. It is there 24/7. It came on suddenly and initially was treated like a UTI. After that, I was treated for Candida. Both were negative. I don't recall an accident or incident that might have caused it. I am going to pelvic floor therapy but it is not helping. I had a Zoom consult with Stephanie Prendergast, a pelvic pain specialist in the USA. She seemed very knowledgeable and suggested I come to one of their clinics for an evaluation.

[AuntieH in reply to EffieT]

It sounds like you are headed in the right direction and the pudendal nerve may be involved. I am on my way to pelvic floor physical therapy right now laying on the back seat as my husband drives. My pain started after I fell on my left side.

Keep trying and keep a positive attitude. Things will improve. You're not alone. 😘

[EffieT in reply to AuntieH]

Thank you for your encouraging words. Did you ever get a diagnostic shot to confirm your diagnosis?

I hope you feel a little more comfortable after your PT session.

[AuntieH in reply to EffieT]

Yes, I had a diagnostic pudendal nerve block at the ischial spine a few months ago and was able to sit pain free for 6 hours which the doctor said indicated the pudendal nerve is involved.

[EffieT in reply to AuntieH]

Thank you so much. Perhaps that's a good way to find out.

[AuntieH in reply to EffieT]

You're welcome. Yes, I think it is.

[pizon]

I went almost 2 years being misdiognosed I suggest you find a pelvic pain specialists I am in the states so I don't know of a dr. In your area start with Google...but in my personal experience only a pelvic pain specialist will be able to give you a correct diagnosis I wish you luck

[EffieT in reply to pizon]

Thank you for your response. I agree with you completely about seeing a pelvic pain specialist. I was planning to see Dr Goldstein in Washington before Covid started. There are very few services available in Toronto.

[pizon]

I saw a dr. Richard Marvel in Annoplis MD he was very good...I have stopped seeing any medical dr.s now for my condition due to being misdiognosed over and over again and did not want a nerve block but dr. Marvel was excelant much luck and stay healthy

[EffieT]

Thank you. I take it you live in the US, but Maryland is not far from Toronto and I could go after Covid.

[babyredbear]

I have Pudendal Neuralgia, very bad pain in my vulva, crack etc. I have Started a series of six shots. I get Two a week. Seems to be helping. Dr Daniel in Houston TX at Pelvic Pain Rehabilitation.

[EffieT]

Thank you for your support. I hope your shots continue to give you relief from pain. How long have you had this pain?

Unfortunately there is very little help in Toronto, Canada. I'm trying to find someone to give me a diagnosis of my pain.

[Jmdls86]

Hi, I was diagnosed with pudental neuralgia after childbirth. I also have urgency symptoms. After 15 months the burning pain has completely gone. I've seen a pelvic floor physio but internal flared me. I've been doing pilates every night and that is what has helped the most.

[Benoirlake]

Hi Effie T ! I am just east of Toronto. It would seem that I have a very similar pain as you do. Did you find anyone in the GTA that knows what they are talking about...i.e.. a Doctor? Thanks you

[EffieT in reply to Benoirlake]

Hello. Thank you for responding. I hope you are not in too much pain. Have you managed to get a diagnosis of your pain? If so, who did you see? I was being treated at the Vulvar clinic at St Michael's hospital in Toronto. I was given a Pudendal nerve block a year ago but that actually made my symptoms worse and caused a pain in my glutes which is still there. I have not seen anyone since then because of Covid. I now go only to Pelvic Physio and am looking for someone else who can help me. Pelvic Physio is good but the pain comes back so I need someone to find the source of the pain. Please let me know how you are and what treatments you have had. Thank you.

[Benoirlake]

Hi...male 66yo. having some weird neuropathic pain throughout my body...like very sharp stabbing pains just about anywhere. 3 trips to hospital...nothing. Then around mid January having severe pain in the perineum area...moved back to the anal area, then forward to the scrotum, tecticales and penis...sadly, I am self diagnosed due to the symptoms. 7th trip to ER, they did a spinal MRI, and saw L5 nerve pinch...problem solved....NOT!!! (Markham Stouville hospital ER AWESOME BTW) I have an appointment on Tuesday at the Acute Medicine Clinic at Oshawa Hospital...hoping for Dr House ! LOL. Pain Clinic on Feb 14, Urologist mid March and Neurologist late April. As this is recent, (January 22)I have not tried anything yet, other than Lyrica and Morphine...so...the L5 nerve impingement explains the stabbing pains in legs and Toes, but not the tingling in face and arms/hands, or the perineum pain...not sure that it is ONE problem or multiple. thanks for listening ! There is also a group called H.O.P.E pudendalhope.info/ that has lots of info but sadly no recommendations for DR in Canada. I heard that there may be a DR at Toronto Western, and am going through the CPSO to see if I can track him/her down. Find the DR. find their specialty (Urologist. Gyn) and see their interests...if Pudendal comes up, THATS the DR to see. I will let you know if I come up with anyone Good luck EffieT.... stay in touch!

[EffieT in reply to Benoirlake]

I am so sorry to hear you are in so much pain. Is the Lyrica and Morphine helping?It has been extremely frustrating to try and find a medical doctor who understands pelvic pain in my case. I found my Pelvic floor physio to be much more knowledgeable. I have a referral to Dr Lemos (UroGyn) at Mt Sinai Hospital but I might have to wait a long time to get an appointment.

My sister has nerve pains in different parts of her body including feet and legs. She is going to a doctor Brill at University Health Network.

Please keep in touch. Good Luck with the appointments!

[Benoirlake in reply to EffieT]

yes the Lyrica definitely helps...Morphine takes the edge off...and good luck with your appointments! There HAS to be a DR in this great city of ours that is an "expert" ? I have tracked down a Dr Peng at TorontoWestern (uhn.ca/Surgery/Clinics/Comp... . Apparently he is an anesthestesiologist who can do a pudendal nerve block. good luck to you and your sister (hereditary?)

[EffieT in reply to Benoirlake]

I've heard about Dr. Peng. He is recommended by a couple of Physicians in the USA also. I hope you can see him soon.My sister's pains are related to a horrible car accident so no pelvic pain just neuro pain in legs and back.

[Benoirlake in reply to EffieT]

sorry to hear about your sister. Also you can tell her to check out The Interventional Pain Clinic, on Jane Street in Vaughan. Dr. James Brown...awesome guy

[EffieT in reply to Benoirlake]

Thank you. I will certainly pass on the info. There's a good Canadian site called pelvichealthsolutions.ca/Lots of information and names of trained pelvic floor therapists over Ontario etc.

[RobertVerde]

Sorry to hear you are in pain - check out this website: pudendalhope.info/ / Also there is a pretty good book that helped me " A Headache in the Pelvis". I have been taking Pregabalin for a few years along with Alpha Lipoic Acid - along wit a great PTY I have been able to live a pretty normal life after 4 or 5 years of very little fun.

[EffieT in reply to RobertVerde]

Thank you for your help and support. I am so happy that you have been able to control your pain. I will certainly try your suggestions. Unfortunately Pregabalin gave me horrible side effects so I will try with Physio and relaxation. I am really interested in trying Alpha Lipoic Acid. How much do you take?

[Benoirlake in reply to RobertVerde]

Thx Robert, yes, aware of HOPE...lots of great info for us. Curious...did you gain weight on the pregabalin. I am on 225 per day (75 3X). yes..."fun" is not first thing on my mind.!

[RobertVerde in reply to Benoirlake]

At firt I did gain a bit of weight - but I cut out most of my carbs until a leveled off and then was fine. I was taking 150 MG in AM & PM - now at 150 in PM only but I take 600MG of alpha lipoic acid in the AM & PM - also for nerve issues. I do get flareups every now and then - I add 15 MG of Meloxicam in the morning when that happens and its takes a few days to get back to normal - its a prescribed anti inflammatory that works great. I used to go to PT once a week for a long time. I now go every month for a tune up is all. I learned how to control it! I highly recommend the book I mentioned in my last note. Keep in touch! Good luck as well.Bob

[RobertVerde]

I take 600 MG in AM & PM - I had side effects to the Pregabalin but it was a choice of pain or side effects. I gained wait - was drowsy and a bit dizzy and tired until my body acclimated to it. I heard of other drugs: Gabapentin and I think Cymbalta that are decent for this as well. I have said this before - the book mentioned - A Headache in the Pelvis - really helped me. I am not pushing it because I get a royalty It helped me understand what was going on with me.