Introducing Myself

[aspire]

Hello HOPE Community,

I wanted to introduce myself. My name is Anne and I live in Arizona. I have been suffering from pelvic floor tension myalgia and possible pudendal neuralgia (at the very least pudendal nerve irritation) for the past seven months. I'm 26 years old, just finished graduate school, just got married, was considering starting a family with my husband, and just landed a full-time job (that I may ultimately have to leave). I have felt really alone, terrified, and heartbroken that the future I thought I had in store may not look like what I want it to. I've been doing pelvic floor physical therapy for three months and was able to see Dr. Mario Castellanos last month in Phoenix.

I was told that endometriosis could be an underlying cause of my issues and was given vaginal suppositories of baclofen and valium. I had a general practitioner appointment this week and was prescribed gabapentin for the stinging sensation I have in my clitoris. I've also had what seems like some symptoms of unwanted arousal. Sometimes the line between arousal/pain is hard to differentiate. I'm considering doing the laproscopic surgery for endometriosis but will wait until my follow up appointment in August to discuss it further.

I joined this forum because it seems to be the most comforting, informative, and supportive group I have found for any kind of chronic pelvic pain issue. I hope its ok to have joined given that my issues are not clearly diagnosed as PN or PNE but I definitely have some pudendal issues going on. I don't think I've ever hated a part of my body more than my pudendal nerve.

Thank you for listening!

[stephanies]

Welcome to the forum, Aspire. You will find many people here who can hopefully answer your questions and provide support. If you don't mind, I'd like to get a little more information. How did Dr. Castellanos conclude you have endometriosis? Is it suspected based on a pelvic MRI? Do you have symptoms of endometriosis? Have you thought about a trial of Lupron before doing the laparoscopy for the endometriosis? Are the suppositories or PT helping at all with your situation? I understand you are scared and feel like your future looks different than what you had hoped. Please try to stay calm as this will help you work through the pieces of this PN puzzle.

Sincerely,
Stephanies

[Violet M]

Hi Anne,

Welcome to the forum. I'm sorry you are on this journey with us but hopefully we can help you in some way. There is a long thread on the subject of unwanted arousal (PGAD) that you might find helpful. http://www.pudendalhope.info/forum/view ... =48&t=1590

Also, you may want to read my article in one of our previous newsletters that focuses on PGAD. http://www.pudendalhope.info/sites/defa ... ne2013.pdf
In that article, I tried to summarize possible treatment options for people with PGAD due to pudendal neuralgia -- basically a list of things that people have found helpful and that may suppress the symptoms enough to make life tolerable. You do have options but it's important to research all of your options and try conservative treatments to start out with.

Please let us know if you have any questions or if we can help in any way.

Violet

[aspire]

Thank you Violet and Stephanies!

Yes, I am absolutely happy to share more information. Dr. Castellanos seemed to think endometriosis could be an underlying cause because of my history and the pelvic exam. During the exam he noted that I had pain with the external and internal pressure he put on my uterus. It seemed odd to me since I hadn't felt that pain before during exams with other gynecologists (although perhaps they weren't performing the same type of exam)

My history with periods has always been problematic. I ended up at urgent care once because I had mind-numbingly painful cramps. Growing up I remember my mom having to pick me up at school because of cramps. When I was finally put on birth control there was some improvement but I still had to miss school and work. I guess I was always told that I just had really bad periods and that there was a higher incidence of dysmenorrhea for hispanic women.

I had an ultra-sound done to make sure there weren't obvious signs of endo. I've had problems with urinary retention because of my pelvic floor muscle tension and the ultra-sound required drinking a ton of water. I ultimately had yet another ER visit and a weekend spent with my good friend, foley catheter.

I was rather surprised that he brought up endometriosis and I found his explanation that "endometriosis can refer pain from the uterus to the pudendal nerve" to be a little less than satisfying. I wasn't one to question doctors but after one gynocologist told me my pain was "all in my head", I've learned to question more.

The suppositories and PT seem to help a little bit at the time they are taken/done but my pelvic tension is stubborn and seems to return in a short period of time.

Thank you for your curiosity and reply! I had never even heard of Lupron so a huge thank you for the information. It definitely gives me more to research and more information rather than jumping to a surgery that quite frankly I have some reservations about doing!

[Violet M]

I was rather surprised that he brought up endometriosis and I found his explanation that "endometriosis can refer pain from the uterus to the pudendal nerve" to be a little less than satisfying.

I wonder if the converse of that could be true too -- that pudendal nerve pain can be referred to the uterus. Sometimes it can be difficult to nail down the exact source of pain and I think you may be smart to hold off on any type of surgery until you have a more definite idea of what's going on.

Violet