pregnancy post PN surgery? who's done it and been ok?

[pianogal]

Does anyone know of others who have had children post PNE surgeries (PNE surgeries that worked), had C sections, and not gotten PN again from the pregnancy? (Celeste mentioned Sonnie and Jessica in another post I made.)

I'm trying to decide to do pregnancy pre-surgery w/Dr. Hibner or post-surgery w/Dr. Hibner.

Dr. Hibner recommended no pregnancies after his surgery (I think he's playing it ultra safe b/c no one knows) but I don't want to wait till another baby before getting my nerve fixed. I'd rather fix the nerve, then have a baby, if it's possible to do safely.

any stories of pregnancy post successful PNE surgeries making PN return without a vaginal birth but with a safe c-section? (ie: horror stories?)

Studies show that pregnancy does not affect the pudendal nerve, only childbirth does. See study: http://www.springerlink.com/content/862k54455677612m/

I had one pregnancy with PNE after a failed PN surgery (in which ligaments were not touched), and I had a C-section and nothing got worse from pregnancy then...but I want more info

thanks everyone.

ps- this was Dr. Hibner's rationale for avoiding pregnancy post surgery (playing it safe) Per his PA Lisa Wadsworth: "Dr. Hibner still strongly believes that if you intend to have another child, you should do so before pudendal surgery. Although the study you found does not suggest that the Pudendal nerve is affected by pregnancy, he points out that there are 0 studies on how the nerve reacts to pregnancy after pudendal nerve surgery. Also the study that you were referring to, does not account for patients who had pudendal nerve irritation before the study."

pps- I just spent an hour researching links on tipna, and found the following
Sonnie’s Success – http://www.tipna.org/forum/viewtopic.php?t=6004
Jessica’s Success - http://www.tipna.org/forum/viewtopic.php?t=6585
Holly ? - http://www.tipna.org/forum/viewtopic.php?t=3814

[Celeste]

That's all I know of. I remember Holly somewhat. She had one side done, got relief, had a baby, and I don't know if she had the second side done. The other cases were bilaterals, so a unilateral isn't a perfect comparison. Sorry. She wasn't a big poster to begin with and I don't know that she's kept up with the forum changes to Tipna or this one.

Jessica and Sonnie both had bilateral TG (in Houston and Nantes respectively) and got slow cures. Sonnie has actually had both of her pregnancies post op. Neither one of them had pain issues during the pregnancy or after their c-sections, so I take that as a great sign that maybe some of the fears are overblown. I do wish I knew more stories but I think much of the PN population here is not in the childbearing zone. I am however really grateful to the new moms who shared their stories so that people like yourself can have some guidance on what to expect.

[Celeste]

Also, that's a good study that you found. I would agree with it simply because I went my whole pregnancy without any pain. The pain was a result of a vaginal delivery. The baby is up so high and nowhere near those bones for nine months.

[pianogal]

thanks Celeste

[sgrandy]

I think I remember reading that the French team has had patients (not sure how many) who have had babies after the surgery with no ill effect...there is no way for us to track those people obviously. Personally, I think it would be better to have a fixed nerve before a pregnancy rather than a pregnancy with an inflammed/entrapped nerve. I'm only 28 and have plans to have children even if, for some reason, I find myself having the surgery (and even if Hibner was the surgeon). I don't see the point in giving something like that up especially with the successes that Sonnie and Jessica had (and neither one of them had their ligaments replaced after they were cut...not sure if that is a factor in Hibner's opinion on no pregnancies after surgery). I guess I'm a little surprised that he has that opinion and it would be a shame for a young patient to be advised of that and possibly miss out on having children in the future.

[Celeste]

Personally, I think it would be better to have a fixed nerve before a pregnancy rather than a pregnancy with an inflammed/entrapped nerve.

I agree, and I would add that it's not even all about the pregnancy...when the pregnancy is over and you have a new baby to take care of, it's just really good if you don't have to be in chronic pain. I can personally vouch for the difficulty of this one.

[sgrandy]

I totally agree! My cousin had a hard enough time after each of her deliveries and she doesn't have PN problems so I can only imagine how difficult it would be for someone who is dealing with a raging PN to look after a newborn...even with help.

Pianogirl...I would go with your gut on this one. Post-surgery pregnancy has been done successfully with patients from the Houston team and from France and the only instructions I am aware of is to have a c-section and not a vaginal birth but other than that, this is the first time I have read of a doctor recommending no pregnancies after surgery. I don't believe this is an acceptable restriction on women of child-bearing age...I think this illness already takes away enough from the people who suffer from it and if a woman gets well and wants to have children than more power to her. There definitely have been no studies or horror stories to suggest that it isn't feasible.

[sgrandy]

FYI...Greg kindly called Holly and her thread has been updated for anyone reading this forum who doesn't read at TIPNA and is also concerned about this topic. The thread can be seen at:

http://www.tipna.org/forum/viewtopic.ph ... 9a35f8bd0f

It seems like she has had a very, very good outcome.

[Faith]

I am in the same boat as you Pianogal (wanting another baby, yet scared of what it will do to my pain). But I know I am in no way ready physically for another baby (my daughter is 16 months old). I can definitely vouch for how difficult it is to care for a baby with this pain. Are you not taking any medications currently? Or would you just continue those medications during preganncy despite their possible teratogenic effects on the baby? I know you can't know for sure that a medicine will cause fetal compromise, but drugs like Neurontin are Category C drugs.

I know this study shows that pregnancy itself doesn't affect the pudendal nerve, but I kind of wonder based on my own experience. My pain started when I got pregnant the first month after using the Nuvaring (birth control) for 2 years. Now at first it was just vulvar pain (and I had a lot of vulvar swelling). The vuvlar specialist I went to said it was all related to pregnancy hormones and should resolve post childbirth. It did resolve. I had a vaginal delivery with a 2nd degree tear though and at 6 months postpartum was still struggling with intercourse and some pain at the tear site. I went to a pelvic floor PT who only made me worse and I started having intense sacral pain (after sacroiliac joint manipulations) and burning with sitting. Interestingly enough this was also at the same time I was weaning from breastfeeding and got my periods back. So my pain has been very closely related to major hormonal changes in my body. Even now my pain seems to change based on my hormones. At ovulation I still get some minor vulvar swelling and pain and then again before I start my period sometimes my pain flares. So, I say all that to say I think hormones can greatly affect PN or in some instances be a big contributor to the possible cause. Hormones are sometimes carried by nerve signals which would I guess explain why many PN sufferers that are women struggle with hormonal flareups. Also in pregnancy there is vasodilitation which I would think could add increased pressue on an irritated nerve. And I can assure you that vulvar swelling is EXTREMELY uncomfortable and I would hate to have to deal with that again personally on top of my PN pain.

Then there is all the stress on the pelvic floor and ligaments during pregnancy. I have major pelvic ligament instability and core weakness so it wouldn't be wise for me to plan a pregnancy right now.

I am not at the point of surgery yet, but if that point comes I think I would have to have the surgery first then try to have another baby. But I am presonally hoping to get better and then adopt because if I get this pain "fixed" I don't think I could ever risk going back. I understand Dr. Hibner's reservations, but he can't force you not to get pregnant. If after the surgery you feel good...go for it. And you do have a couple other ladies experiences to go by too so that's nice.

Keep us updated on your case and decision!

[Faith]

I have been trying to look at these links to the TIPNA site, but I am not a member and when I try to register it keeps saying my email has been banned (I have tried like 4 email addresses). Anyone know what is wrong or if there is a way I can look at those threads without being a member?