Help! PN getting worse and don't know what to do next.

[Barb]

Hi everyone,
I am new here, but I have been so encouraged by what I have read from the group......especially on days that the pain gets the better of me. My journey into this maze of PN began two years ago when I had vaginal prolapse surgery. Unfortunately, the doctor used mesh and did not tell me. He used A LOT of mesh and attached it to my sacrum....long story short, it caused incredible problems! I flew across country and had it removed by a wonderful surgeon at UCLA. I was doing ok for three months after the surgery, but then PT found I had a hypermobile SI joint causing a lot of movement. We think the movement was caused because the sacrotuberous ligament that holds the sacrum in place has become very lax. I have been in PT for a year. We have tried EVERYTHING, including taping, wearing an SI belt for 6 months, internal myofascial release, dry needling, and on and on. Nothing has helped.

My pain started on the ischial tuberosity and now is more internal and rectal. I am on neurontin and tramadol. I hate taking anything and resisted for a long time, but I was in so much pain, I gave in. I flew to New York last week and had an MRI which is being read by Dr. Potter. I have not gotten results yet.

I have all the classic PN symptoms and wonder if anyone has dealt with PN from SI joint.

I have been so inspired by all the stories of courage by so many on this forum. My life was so normal and active before this and now I can not sit and my life has come to a screeching halt while I try to deal with this pain.

Any suggestions would be much appreciated.

[calluna]

I too have PN following gynae surgery using lots of mesh. Ten pieces, I was told. (Mine was not attached to the sacrum, but higher up, I was told.) And I too had the mesh removed - well, most of it is gone, some of it seems to be impossible to get at, unless it moves again - it is embedded in the pelvic floor at the moment, I can feel it and so can my surgeon but he cannot get at it.

I still have the pain. Except, the meds are dealing with it now. There's more to it, but that's basically the story.

Are you getting good pain relief with the meds you are taking? I gather that you are not....

I did not get on well with Neurontin/gabapentin. I found that the side effects were just horrible, and I was not getting sufficient pain relief to justify taking the stuff.

Tramadol - well, it did take the edge off but it did no more than that, and I found it useful, particularly the slow release version. I needed to take this at the full dose, though, 400mg daily, and I was on this for a couple of years.

The combination I'm on at the moment, however, is a wholly different thing. My pain levels are down to zero for most of the time - yes, zero. Absolutely brilliant. Different things seem to work for different people.

I do wish that I had some helpful suggestions re the SI joint, but all I can do is offer sympathy and say, I feel your pain. Because, you know, I do. Or at least, I did.

I hope you find a solution.

[Barb]

Thank you Calluna for your reply. I was hoping I would hear from you as I had read some of your posts and knew you also had mesh complications. It is maddening, isn't it, to go through a surgery that is suppose to help you and instead it makes your life a nightmare.

I do have a wonderful family that is very supportive and that helps so much, but I know, like everyone here, I just want my life back. I am trying to stay positive and trying to stay active ( as much as I can) and eat the right things, so I guess it is all I can do for the moment until I hear the results of my MRI.

Do you mind telling me what combination of meds you take that is making such a difference? That is wonderful. I am seeing my pain management doctor tomorrow and I would love to ask about other meds.

Thanks so much. Take care.

Barb

[calluna]

You are quite right about the surgery being a nightmare. Although at the time I was very glad to wake up and find my insides all definitely in instead of out, if you follow me, and all functioning after a fashion instead of not at all. Numbness on one side seemed a small price to pay, little did I know...

It's in the signature - currently 200mg pregabalin and 100mg topiramate. It was my lovely pain consultant Dr Greenslade at Frenchay Hospital who suggested this, he said it would be a very effective combination and he was right. I have tried pregabalin by itself before and it was much better pain relief than gabapentin/Neurontin and less side effects - this combination is better still.

Dr G said I could take topiramate up to 100mg and pregabalin up to 300mg. I don't think I'm going to go past the current level, the side effects of the last 25mg pregabalin have been quite difficult to cope with. Just about settled now though.

We titrated up to this level slowly. My GP wanted me to take things faster, I was not so keen, there were some quite scary side effects along the way (topiramate) although they did not last long, but I don't like playing around with these things. Each time I waited until the side effects had gone completely before I took the dose up another step. As the dose has got higher, it has taken longer for the side effects to settle. This last step up - well, I was at 175mg of pregabalin and still getting some pain, I just wanted to deal with that. Have to watch that thing where you are chasing your increasing activity levels with increasing medication levels, and never quite getting caught up.....

Anyway I did not anticipate being hit so hard with the side effects, it has been like all the other steps put together in one. I do think the pain relief is better, but wow I have been so spaced out and dizzy and slow. It is day 18 or 19 today and I am definitely coming out of it, I feel like myself again today, have felt ok to drive again for the first time since the dose increase. I was really surprised when I checked the diary and saw it was less than three weeks, it feels such ages.

Topiramate is supposed to make you lose weight - not at this dosage though, I don't think. Have lost precisely one pound in weight since I started taking it. In fact I did gain 4lb at one point, but have lost it again, plus one lb more. I don't think I'm going to get the BMI into the green zone anytime soon, sigh...

Anyway there it is! Different things seem to work for different people though. I do hope that your appointment goes well tomorrow.

[Barb]

Thanks for the info. I need to read the signatures more I just figured out how to insert that. I joined last year, but never posted, so I am learning the ropes.

I have titrated up to 1200 mg of neurontin and not having any side effects, so I am going to ask if I should just stay with neurontin and titrate up to see if that helps with the pain.

I hope your side effects calm down soon. It really is a balancing act to find what works best and at what levels. It would be nice to lose weight on these meds. I have gained 10 lbs. since I started neurontin.

Thanks again for your help. It is so nice to talk to people who understand the pain and struggles of this illness.

Keep feeling good!

[calluna]

Wow no side effects?! That's wonderful! I was struggling at that dose and getting no real help with the pain. By 1800mg I was noticing a bit of help but honestly I was so hating the way it made me feel that I didn't think it was worthwhile...

I really think that you are right. If you are getting some help already, and no big deal with side effects - well, people take this stuff up much higher than 1200. I think 2400mg or 3600mg even - yes, just had a quick look at the pain clinic website, they take it to 3600 there.

Sorry to hear about the weight gain, must be very frustrating. One of the things that I said to Dr G was that I really did not want to take any meds that would cause me to gain weight - that's a bit of a personal thing, though. Maybe this will stop? Can hope for that, anyway!

I am trying to lose, I am overweight - I know that carrying less weight would mean less pressure on the pelvic floor which would be less pressure on the nerve, which would hopefully mean less pain. And it would hopefully mean that the continence problems would be easier as well. Need to lose 22lb to be in the green zone of the British Heart Foundation's BMI chart. Started focussing properly on this at the end of Feb 2012, then well in the red zone, currently in the middle of the amber zone so it is an ongoing process - am about halfway there! It is going, but so slowly. I will get there. We are never going back to our old way of eating, we feel so much better these days.

And I am feeling so normal this morning! Hope all goes well for you today, will be thinking of you.

[nyt]

I had a hysterectomy and bladder sling mesh done at the same time and woke up in trouble. That was 6 years ago. Took two surgeries to remove most of the mesh but because of the type of bladder sling I had (transobturator) there is no way to know if there is still some mesh remaining in my legs. I wouldn't be surprised if there is some still left. Unfortunately, mesh does not usually show up on MRI unless one gets lucky and a small portion is seen but one should not plan on having the mesh found during any MRI. Meshes for prolapse surgery can damage the pudendal nerve so there could be a possibility that a portion of the mesh along with the needle used to attached the mesh damaged the pudendal nerve. Most of us with mesh complications have more than one problem. Hopefully, your MRI done with Dr. Potter will give you some indication what direction to head next.

There are several choices for meds if one does not work. Classe of medications that are given for chronic pain include: Tricyclic antidepressants, selective serotonin uptake inhibitors (SSRI), serotonin-norephrine uptake inhibitors (SNRI), and anti-seizure meds. Some very common meds that are first line defense are: Elavil and Lyrica. Unfortunatley, trial and error is the only way to found the right combination that works for you.

[Barb]

I am very depressed today as I got the results of the Potter MRI. I am entrapped at the perineal branches of the pudendal nerve, as well as the posterior margin of the dorsal nerves to the clitoris. I was holding out hope that it was just irritated or inflamed. It is very hard once the cold, hard facts hit you in the face.....as you all know, I'm sure.....guess I was still in that denial stage, trying desperately to avoid the inevitable. I don't know where to go from here...very overwhelming!

Also have very extensive pelvic floor scarring affecting the levator ani muscle and the lower portion of the anal region and the vulva. Do these doctors have any idea what they are doing to women when they use mesh? The entrapments are in scar tissue. The initial surgery was only suppose to be a bladder lift. I am so angry that this didn't have to happen. (excuse me while I vent).

Does anyone know if these are the areas that Prof. Aszmann in Austria is suppose to be known for helping?

Thank you nyt for your post. I am so sorry for all of us who have been affected by mesh. I do think it is time for me to look at an antidepressant. I was trying to stay away from elavil as I know it causes weight gain, but I know it can help.

[Barb]

Thank you Calluna for good wishes. Wish I had better news. I long for the day when I can wake up and not be in pain. I am going to increase the neurontin when I can and hope there will be no side effects.

Keep feeling good!

[calluna]

Oh dear, I am so sorry to hear that it was such bad news, Barb.

I have never had any MRI so I am in blissful ignorance basically as to exactly what is wrong inside, and to be honest I think I'd rather stay that way. Perhaps I'm being a bit naive. I don't even like thinking about those stab incisions, there were four of them, pulling different bits of mesh into place, all of which have proved impossible to remove.

And vent all you like, you are entitled. We're all here for you.

Do you have a therapist to whom you can talk? If you have the opportunity for Cognitive Behavioural Therapy, it can be very useful - it doesn't make any difference to the actual pain, of course, but it can certainly make a difference to how one copes.

One thought. If you are looking for a med that will function as an anti-depressant as well as giving pain relief then you might want to consider duloxetine/Cymbalta rather than amitriptyline/Elavil. It is a modern anti-depressant, supposed to be much better for neuropathic pain relief than amitriptyline, and I haven't heard that it causes weight gain. There are quite a few people on these boards who have found it helpful.

Hang on in there.