MRI test - Why Not?

[JAT]

Hi April. I've had chronic pelvic pain for 22 years during which time I had a 2.5 hour long laparoscopic surgery for endometriosis, take down of adhesions, and moving my organs where they belong (my left ovary was adhered to my sigmoid colon, all of which adhered to my left pelvic sidewall). That took care of the acute pain, but still left with burning, icy-like pain in my pelvis and perineum, as well as urinary frequency, urgency, and retention. I was later diagnosed with pelvic congestion syndrome via 2 tilt table venograms. Symptoms CAN be similar to PD or PNE. I have not been officially diagnosed with the latter as for one, the financial expense is high. With that being said however, I've had countless MRIs done which did not visualize the pudendal nerves - I knew they wouldn't. I would like to settle this issue once and for all and get an MRN done. I know of a 3T imaging facility but would need Dr. Potter's protocol. Do you still have it? If so, would you please email it to me? I haven't been on this site for a very long time and don't recall if there's access to my email address. I would be most grateful, if you still have her protocol, to please forward it to: jthorson2@wi.twcbc.com (Tanya, aka "JAT"). In advance, thank you for all of your efforts.

Hi Dorothy,
MRIs rarely provide a definitive diagnosis of pn, but they are commonly done as a way of ruling out alternative explanations for the pain. I had two MRIs. My first showed nothing, and my second one (done after I'd had pain for 3.5 years) showed edema between the SS and ST ligaments on the left, which was exactly where my pain seemed to becoming from. So, in my case it was somewhat useful, but it is unusual to have that kind of thing show up on an MRI. PN is normally diagnosed with symptoms, information about the onset, and a nerve block (putting a numbing agent on the nerve) that reduces the pain. But, if you do get an MRI, it may make sense to use Dr. Potter's protocol for the MRI and to do it on a 3T MRI. That is what I did the second time. I got the protocol from Potter's office (they emailed it to me), and I gave it to my ordering physician, who then sent it to the place that was doing my MRI. I also talked with the MRI place to be sure they could follow the protocol. So, if you do get one, it may make sense to use her protocol. If you pm with your email address, I can send it to you over email.

April

[April]

Hi JAT,

I will email it to you tonight. I'm so sorry to hear about your long struggle with pelvic pain. It sounds tremendously difficult. It would be much easier if all of these problems could be consistently identified on MRIs or MRNs. I hope the this protocol will help.

April

[SLR]

Hi,

I have been down a very long road of ruling out/testing/ and seeing countless physicians as well as Physical therapists. I work in the medical field and could tell very quickly what I had was not just a case of pudendal nerve irritation, it was compression. I had a hysterectomy because the one physical finding was an enlarged retroverted uterus that had literally engulfed my entire pelvic cavity. I thought possibly the uterus was compressing my pudendal nerve. Endometriosis was found and the adhesions were taken care of however my pain remained unchanged. I wanted to tell you this because I finally realized the significant possibility of my huge uterus causing compression on pelvic veins, causing the pelvic congestion syndrome, in turn causing pudendal nerve compression. I spoke to an Interventional Radiologist that I work with and based on my symptoms he agreed. I had a CTV done which showed enlarged pelvic veins. Both of the internal iliacs, and particularly enormous pudendal veins. I realized this suddenly made a whole lot of sense. I had a pelvic vein embolization done in which both pudendal veins were coiled, as well as both internal iliacs and all of its branches. The ovarian veins did show some reflux so he did them as well. Something that I think may be of importance to note is that the Interventional Radiologist that did my embolization told me that he does between 6-8 embolizations a year for PCS. He has not seen nerve involvement before, and as we all know pudendal neuralgia is a rare occurrence. I presented completely opposite however most all of the other patients that he sees. Typically it is the ovarian veins. In my case however it was the pudendal veins predominately, and the internal iliac veins. Also I have a very slender build. And in his words, with everything I have going on in there it was like trying to pack everything into a tiny New York sized apartment, there just wasn't enough room. Anatomically the pudendal vein runs alongside the pudendal nerve and the pudendal artery. This will be a long slow process to see if this works, but it statistically shows if this is the cause of your issue it will really help you. I have also met another woman my age (45) that works in the medical field that had pelvic congestion syndrome and presented with nerve issues as well. She had an embolization done years ago and it WORKED for her. I thought possibly this might be something you wanted to look further into. I believe this condition is widely unrecognized and overlooked by most physicians. Since I work in the medical field I have direct daily access to a wide variety of physicians, including about 18 Radiologists. And in the end I was the one that had to actually specifically bring this to their attention, it was completely overlooked for years. Most insurance will not cover the embolization treatment. I was extremely fortunate, Cigna covered mine. You have got to be your own advocate, don't give up, keep pushing and then push even harder. For years countless physicians wanted to just prescribe me an antidepressant, tell me to meditate and go to yoga and PT. I know this isn't going to be the reason for everyone's pelvic pain, but I think it is worth a closer look. Keep pushing....

Sharon

[SLR]

I wanted to post an update from my pelvic vein embolization done Feb 2022. I have had no relief of symptoms at all. I had a Radiologist re-look over my old MRI's recently and now they are calling a nerve root compression at level T-12 L-1 from a significant sized osteophyte (bone spur) compressing on the nerve root. They say at this level it can refer to the groin. So I'm meeting this week to discuss a few nerve blocks to see what happens...I'll repost again after he blocks are done.

[Violet M]

Good luck with the nerve blocks. I hope they will give you some relief.

[April]

Great that they reexamined the MRI and have new ideas about the source of the pain. Good luck with the blocks. Yes, let us know how it goes.

April

[SLR]

Hi came back on here to post another update. I began combined HRT about 9 months ago ( I am 49) for a sudden onset of pretty intense menopausal symptoms. This has had an unexpected result. After about 8 months on HRT both the sciatic nerve pain, hip pain, leg pain, as well as finally the pudendal neuralgia were nearly completely gone to the point sitting no longer even bothered me. I have been living with severe chronic daily pudendal neuralgia and sciatic since 2020 and after 8 months on HRT it was gone. Then I was unable to get estradiol for 5 weeks because of the nationwide shortage. Going without the estradiol suddenly caused a big shift in my hormones, and the quick return of the nerve pain, all of it. I began researching Menopause and Endometriosis and was finding articles talking about the use of combined HRT ( estradiol and progesterone) for the management of menopausal symptoms with endometriosis. As well as the specific location that my endometriosis is in. I had a laproscopic surgery in 2021 which diagnosed it, however the surgeon ablated it. It should have been excised. My endometriosis is in the posterior cul de sac (space between the vagina and the rectum) as well as on the uterosacral ligament, which is right where the sacral nerves are. And my symptoms correlate specifically to what happens over time with untreated endometriosis. In my 20's symptoms only correlated directly to my horrible menstrual cycles otherwise I had experienced no pain outside of that. In my 30's I noticed my hormones shifting and developed night sweats and other perimenopause symptoms along with severe pain with intercourse. I was told I was too young and use lube. Then at 43 I had a sudden massive explosion of back and pelvic pain with the symptoms of both sciatic and pudendal neuralgia which now became daily constant pain. This timeline shows how it progresses over the years with the hormonal fluctuations, and why it responded to the combined HRT. This was all the clarity I needed. I am going to get excision surgery done at UNC and will post again after...

[Violet M]

Thanks for sharing your story, SLR. I have not heard of HRT therapy clearing up pudendal neuralgia but clearly it is working in your case and sounds like it could be something other women with endometriosis and pelvic pain might want to ask their doctor about. Wishing you the best with your surgery and we hope to hear good news from you in the future!

Violet

[April]

Hi SRL,

I'm so glad you've found relief! And many thanks for posting this update. Your experiences may be useful to others who also have endometriosis (or suspect they have it). Let us know how things are after the surgery.

April