New to PNE/PN

[Kimchee]

Hi there,

I wondered if you can regain walking and hiking and or swimming with PN or PNE?

Backstory on me:

Gave birth to beautiful twin girls 1/14 via c-section. A little over a year after their birth I started experiencing groin pain. 6 months of PT and not better. Did MRI and was diagnosed with a labral tear. Ended up having hip arthroscopy (big mistake). After surgery symptoms became way worse. At times walking long distances flares up groin pain and now I am unable to sit for long periods of time. Lots of perineal pain and anal burning at times. I went from a high level athlete to a couch potato....well not total potato because I am still a full time Mom (best job in the world).

After seeing several Dr's who couldn't find anything wrong I found a pelvic floor therapist who has helped a lot. I started gabapentin which has helped the pain level in my groin quite a bit. I started walking and ended up doing too much (1 mile walk) and I am experiencing a flare up. I am scheduled to see Dr. Hibner in AZ in March (looking forward to some help in finding out what is going on).

Will I ever be able to active again? Before all this I enjoyed hiking, biking, walking, swimming, hunting, fishing, dirt bike riding....please tell me I will be able to reclaim some of these??? I am so sad at my situation (at times desperate and high anxiety)...

Thanks!

[Violet M]

Hi Kimchee,

Congratulations on the twins -- I agree with you being a Mom is the best job in the world.

Every person is different so it's impossible to say for sure what will happen for you but just to give you some hope.....I went from being very active and fit before PNE, to being a couch potato like you. I was in such bad shape I did not see how I could ever get back to a decent life, but I have a great life now. There are some activities I have to avoid because they cause a flare-up but there are many things I can do now. Last summer I took some mountain hikes that were about 15 miles long on uneven terrain. I exercise 3 times a week using exercises from The Firm Videos (step aerobics with light weights). I frequently walk 2-3 miles or more a day, some of it uphill. I can swim. The things I don't do are jogging and biking because these seem to flare things up.

I think the important thing is to let your body rest and heal for awhile -- maybe even a couple of years until you are feeling better, and only do very light exercise. Then start very slowly to add things back in that you used to do. Five months after surgery I started walking 5 minutes a day and then increased it to 10, then 15, etc. I know it's hard to stop for awhile and let yourself heal. When I did that it seemed like forever but now when I look back on it, it wasn't really that long and it was worth it for the life I have now.

If you have any chronic ligament strain from your years of exercise, you might want to consider prolotherapy to strengthen the ligaments. I had several prolotherapy injections and I feel that they helped stabilize my pelvis.

Take care,

Violet

[Kimchee]

Thank you Violet!

A hike through the hillsides would be Devine or light swimming too. I know I won't be able to "pound out workouts" quite like I used to but if I could go walking and hiking or swimming (even if its a more moderate level) I will be thrilled. You are right about the comeback thing...I need to take it real slow and step by step before I add more (I'm not very good at that). Thank you for the advice on the Prolotherapy. I will check into that!

Take care and thanks for your wisdom and guidance!

Kimchee

[Violet M]

Kimchee, you could probably swim now if you avoid the frog kick. But if you try it, just do a little bit and see if it affects you.

I remember when like you, I would have been thrilled just to walk around the block and have no pain. I never dreamed I would be this well. I actually probably understated my mountain hikes. It was really climbing the mountain with an elevation gain of about 3000 feet. There was no technical climbing but it was strenuous about 7 miles up and 7 miles back in about 8 hours. I did another longer climb without quite as much elevation gain and I did a bunch of slightly shorter climbs too. So it wasn't a one-time thing -- it can be a regular lifestyle. The mountain is covered with snow right now but I hope to go again next summer! So, go get well for a little while and maybe I will see you on the mountain one of these days. The secret is to take it slowly and when you do start back, you have to strengthen your body slowly and gently. Time and patience is key when it comes to healing nerves.

One problem with prolotherapy is that insurance may not cover it. I found one doctor who specialized in physical rehabilitation and medicine who gave me prolotherapy injections into the SI joint area and used a tiny bit of steroid in it so that it could be coded as a steroid injection and insurance covered it. You don't really want the steroid because you don't want to suppress the inflammation response that causes the ligament to try heal itself but she used just a very small amount of steroid.

Violet

[Kimchee]

Thanks for all your help Violet!

It is hard to not get emotionally down when you are limited by flare ups and not knowing what is going on. I have spent so much money on PT (external and pelvic floor) and neither seem to help that much. I hope I see you up on that mountain someday! We spend our summers up in WA state and I missed being on the trails all last summer. I hope by this next summer I might be back in the forests again. You climbing that mountain has given me hope! Keep going Violet! I am so happy for you and hopeful for so many others in pain. I can't see your profile right now but did you go see Dr Hibner at all? I have heard a lot of nice things about his treatment and hope he will be able to help me figure out what nerve is involved in my pain. He seams conservative in his treatment (suggesting surgery only after after all other measures have failed). I e-mailed a Dr Dellon a month ago and he suggested ilioinguinal and illgastic nerve involvement and said surgery was necessary. Have you heard of successful conservative treatment for these nerves without having to do surgery? Nerve block success?

Thanks
Kimchee

[Violet M]

Kimchee,

I went to Dr. Bautrant in France. I didn't see Dr. Hibner because he wasn't doing PNE surgery yet when I had my surgery but if he had been, I probably would have gone to him instead of traveling all the way to France.

I think cryoablation would be another option for those nerves if you didn't want to consider surgery. My understanding is that you would first have to have a successful nerve block to isolate those nerves and see if those were the nerves causing your pain before trying cryoablation. There's a gal with username acw on the forum who had successful cryoablation of the ilioinguinal nerve. http://www.pudendalhope.info/forum/view ... ion#p53993

Violet

[Andy_Pablo]

I also miss doing physical activity. Football, surfing, running, cycling, weights, kickboxing, etc... Miss being able to participate... So, I understand your frustration. I hope your injury recovers enough for you to be able to return to the things you love...

[Kimchee]

I am so grateful for your support and understanding Violet and Andy_Pablo. I think my situation is not the worst (there are so many amazing and strong people like yourselves that have gone through so much more than me) but I am still scared of what the rest of my life might be like if my situation doesn't improve or gets worse. I have been through a lot in the past six years. My oldest son was killed in a plane crash 6 years ago and between losing him and my health it is like the last straw. Sorry for this latest info. I just woke up in the middle of the night in fear. I just hate not knowing. I see Hibner in a few days and I am almost scared to find out what is going on inside. I sure do hope he can help me.

Sending all my love and support to you guys. Thank you again for being there for me when I reached out!

[Andy_Pablo]

I would say that everybodies issues are relative to themselves. Your problems & concerns are no lesser than anybody elses. Those anxiety attacks are horrible. Mine have become less frequent as time has passed. I would imagine yours could too. I am so sorry for your loss. It doesnt seem fair that life should kick people when they are down. Any time you need to blow off some steam, this place is here. Andy.

[Violet M]

Kimchee, I am so sorry about the loss of your son. I can only imagine that losing him has been unbearable. I know that some people feel their PN is related to emotional trauma or stress so maybe that is something to explore but whatever happens, I hope you will be able to find a solution that works for you. All the best with your appointment with Hibner.

Violet