Health Organization for Pudendal Education

Hello! My name's Emily... I've written on here a few times, I have had pn since I was about 14 and am currently 18. I have managed to keep my reproductive system in tact throughout a few surgeries, though I have endometriosis all around my lumbosacral plexus and abdomen in addition to pudendal neuralgia. Because of this, I have had many laporoscopies, stripping of my pelvis, nerve decompressions, and periformis resurrections over the years.

I am fully aware that the scarring from the surgical endo treatment will most likely impede my fertility, and that pn has little effect on the ability to conceive (assuming one is lucky enough to be able to participate in intercourse). Despite this, I can't help but wonder: would it even be possible for someone with pn to carry? how could we manage birthing, even with the possibility of a c-section? Pn pain makes it so difficult to even go about the activities of a sedentary lifestyle, and the prospect of pregnancy sounds way too painful for me to even comprehend (especially knowing the pain healthy women go through!)

I have years before I even consider having a child, but I cannot help but be so afraid that the option of carrying my own baby someday is already gone. Does anyone have any feedback with this topic they'd be willing to share?

Thank you all so much- happy holidays and good health!
Emily

Emily, we've heard back from several women who have had successful PNE decompression surgeries and then went on to have successful pregnancies but with c-section deliveries. I think they have moved on with their lives so they may not answer your post but I just wanted you to know it is possible to have a successful pregnancy after having had a diagnosis of PNE.

Violet

Lauren (aka pomegranate) who posts on here some has PN, history of endometriosis, and is currently pregnant. She has not has PN decompression and seems to have it "under control". She plans to have a c-section. You should talk to her. I know it's hard not to worry and wonder what your future will hold. I got PN with my first and only pregnancy. I would love to be able to have another child for my daughter to have a sibling, but my pain is too debilitating right now to even think about that. I do hope one day to get my pain under control enough to adopt. There are so many children around the world who need a good home.

Hi Emily,

I'm the Lauren that Faith is referring to. I'm six months pregnant and do have a history of endo. Mine was/is "extensive stage III", but I am fortunate in that I had no permanent tubal scarring or blockages, and very little ovarian involvement. After trying for over a year, we unexpectedly got pregnant just before we were going to begin fertility treatments.

You have really been through the wringer in regards to endometriosis. I am so sorry! Pelvic pain is never easy, especially when you're dealing with multiple pathologies and comorbid conditions.

There was definitely a time where I thought carrying my own child or even trying to conceive were both out of the question. I've been dealing with a pudendal neuralgia diagnosis for over two years now, although I've had pelvic pain for longer than that. My PN pain has been pretty responsive to lifestyle modifications, some medications here and there, lots of physical therapy, and correcting other pelvic pathologies (endo, hip dysfunction, etc.). I don't lead a pain free life by any means, but I'm functional most days. I did consider more invasive treatments or surgery for some time, but thankfully I have had some success with conservative measures. At this point, I believe I'm a person whose PN was caused by pelvic floor muscle dysfunction and other pathologies and conditions, rather than the other way around (PN causing PFD). I just think my body created the perfect storm for PN.

I'm planning on a C-section delivery, and am working on a post-partum pain management plan and support. I have made it through pregnancy thus far with very minimal pain medication or muscle relaxers and have treated pain instead with massage, PT, ice, heat, and rest. I recognize that pelvic pressure is only going to get worse in the next three months, so we will see how my pelvic pain responds to that. My husband and I have made it so that during this time in my life (pregnancy) my responsibilities are very minimal, with the exception of work. I do hope to breastfeed, so that will limit my med options for awhile. Also, I am not planning on returning to work after baby boy comes.

Let me know if you have any other questions about this. I'm not around much, but I do check in every now and then. I'd be happy to talk with you in regards to being young with this condition...I was 22 when my overall pelvic pain started, and 24 when I got the PN dx.

Lauren

A boy!!!!!!!!! How exciting!!!!

Hi Emily:

I have had two pregnancies and two c-sections. The first was prior to my diagnosis and PNE surgery, and the second several years after. I can't say pregnancy with this condition was easy, but it certainly is possible. I can tell you that it was not recogmended by most Doctors who knew me, and the pain I am in. It was something I had to do because I wanted another child enough to suffer it out. I found my pain actually improved at the end of my second pregnancy and was much improved while I was nursing. Some women with endo go into remission during the 3rd trimester and while nursing. Oddly I am told I don't have endo?
I'm still not sure why this was the case for me.
Regards,
Bridget

Bridget wrote:I found my pain actually improved at the end of my second pregnancy and was much improved while I was nursing. Some women with endo go into remission during the 3rd trimester and while nursing. Oddly I am told I don't have endo?I'm still not sure why this was the case for me.

Interesting Bridget. My PN symptoms (although no pain with sitting) began during pregnancy and were significantly better (basically gone except for pain with intercourse and that could have just been postpartum pain) while nursing. I have not found anyone else to have these symptoms before. I have pretty bad pain flares with my period, but no one has ever thought I had endo. I tried to go on birth control pills to mimic the hormonal effect of nursing, but it only made my widespread pain (that started 2 yrs after my initial PN symptoms) worse. It's all very strange.

Did your PN surgery help you?