Not sure what to do/where to go from here.

[Lindsey89]

Hi. So a bit of a backstory, I started with interstistial cysyitis symotoms,(still have them), and I believe the cystoscopy I had done caused some problems. Within a week of it I had mild tingling to left labia. Soon after,I had pollyps removed from the neck of my bladder (burned off) and 23 hours of silver nitrate. A month later I had a small genital femoral hernia repair with mesh. Yepp,mesh. 3 weeks after that more PN issues and thigh pain happened. This was all in 2014.
Over the course of time I've developed more vaginal issues. Back in late 2014 I had internal deep inside arousal that would come and go. Recently it has come again,some times are worse than others. Since 2015 I've had clitoral pressure. The PN area has problems,all the way from bladder, through nerves such as urethra and deep in muscles of vagina,and often periphormis pain.
Oh,and In 2015 I found out I have lyme disease.

So, I've done many,many treatments. Bladder instilatins,some type of nerve blocks when I saw Dr. Echenberg in 2015. But my symptoms werent as bad then and what was there,I didnt really notice a change with the nerve blocks. Last spring I also had vaginal trigger point injections,and straight after to pt so i could handle deep internal massage. The injections didnt even last 24 hours,and still in that time,didn't do anything for the sensitive nerves around urethra,and that whole area. Not sure what to call it.

Have done at home instillations,not helping.
Physio therapy, after that,instead saw someone who knows about pn who did reg womens pt for several,several months. While she saw improvements as far as muscles,I didnt feel them.

After her I had lymphatic massage therapy. Which also requred going up a lot of stairs. After a few sessions,my clitorus began to have random spasms. Idk if it was the gentle massages or all the stairs. However,I stopped going. Spasms have continued randomly.

I don't use the dialater anymore.

Most recently I've started going to a friends house to try the hyperbaric oxygen chamber. Im sure it would be beneficial,however,Its in the floor and I have to crawl in and out awkwardly. I feel this may be the reason why Ive started to have the deep vaginal arousal up again. So,after several sessions of that (1 hour,twice a week) Ive taken a break from it.

I feel like over the course of over 2 1/2 years I feel like I've only gotten worse. It doesn't seem to just stop or maintain. I used to could still go out,even if it was only 2 or 3 times a week. For several months now,I can't really stand very long,and have extremely hard time walking around a store. So I'm at home most of the time.

I take tons of vitamins and things for lyme,but for the other stuff,I take 50 mg amytriptyline, clonipan morning and night,xanax as needed,tramadol as needed.

Idk where to go from here. I feel like I have to take more action this year. But idk what I should try next.

[Andy_Pablo]

Hi there. Im sorry you are suffering. I recognise those desires to be more pro-active, & the frustration when things dont go to plan. Did they give you a PN/PNE diagnosis after your nerve blocks back in 2015? If things have changed for the worse, it may be an idea to try them again, even if its just for diagnosis purposes. I wish you good luck.

[Violet M]

Do you have complications from lyme disease in any other areas of your body or were you able to get the lyme's treated successfully? Is your pain primarily on one side of the pelvic area or both sides?

Dr. Hibner is an expert on mesh so if you feel like the mesh is contributing to your problems maybe he would be the one to see. You have lots of other options too but it's kind of hard to say on a forum what's the best plan of action. I think the important thing it so read a lot to find out what all of the different options are and then decide which one makes the most sense to you.

Violet

[Lindsey89]

Hi there. Im sorry you are suffering. I recognise those desires to be more pro-active, & the frustration when things dont go to plan. Did they give you a PN/PNE diagnosis after your nerve blocks back in 2015? If things have changed for the worse, it may be an idea to try them again, even if its just for diagnosis purposes. I wish you good luck.

Yes, Dr. Echenberg have me PN diagnosis 2 years ago just based on touching the area. He did do blocks but I didnt really notice it doing anything for me. A few months ago a local dr. Did trigger injections so a PT could massage a lil deeper. The trigger point just made the areas feel heavy and only lasted 24 hours or less than.

[Lindsey89]

Do you have complications from lyme disease in any other areas of your body or were you able to get the lyme's treated successfully? Is your pain primarily on one side of the pelvic area or both sides?

Dr. Hibner is an expert on mesh so if you feel like the mesh is contributing to your problems maybe he would be the one to see. You have lots of other options too but it's kind of hard to say on a forum what's the best plan of action. I think the important thing it so read a lot to find out what all of the different options are and then decide which one makes the most sense to you.

Violet

Its hard to say for anyone who has Lyme disease where the lyme is specifically located. Any time I have sharp pain,if it's PN area or somewhere else like side of my leg,I get goosebumps in splotches up my left arm. Which to me is a Lyme thing. It's not in remission. Very hard to treat. Looking into another Lyme dr. Though.

Primarily the pain was on left but now it's on right side as well,but the left is always worse. It's getting to wear I can't stand longer than 5 or 10 minutes. Things Did get worse 3 weeks after hernia repair with mesh,but Idk if that was coincidence or not. I already had nerve irritation mildly after a bladder cystoscopy. I have heard that mesh removal makes things worse and is more dangerous so I'm not sure if thats even an option or what Dr.Hibner would suggest. I'm only some what familiar with treatments. I've done physio pt,reg pt,nerve blocks and trigger point injections. It's frustrating though that drs. Not suggest anything like nerve ablasion,cyablazion (or whatever it's called to freeze the nerves), and no one ever suggests pain pumps either.
I talked to Dr.Echenberg on the phone yesterday and asked him why does in some people (me) it get worse over time? He said I'm using those nerves all the time,(you have to obviously, anytime you're sitting on them,walking,etc)... So Im thinking, what will stop this from getting worse? Even if I try more treatments. It's all so confusing.

[Amy01]

Sorry to hear about you Lindsey. At times things don’t go as we plan....i wish you all the luck