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

[Barb]

Bless you Calluna for your kind words of encouragement. I will not lie, it has been a tough day. I've had a good cry. Now I know I need to get on with it. Life goes on and I have a beautiful 25 year old daughter and a husband who need me.

I do not have a therapist, but it might not be a bad idea at this point. I am normally such a positive, upbeat, happy person, and I have definitely noticed a difference in my mood as of late. I am also going to ask my doctor about an antidepressant. I know it takes trial and error to get to the right one.

Thanks again for kind words. As my mother always said, "This too shall pass."

[calluna]

Barb, I've been thinking about you today.

I was talking with my husband, and I mentioned how dreadfully hard it was for you finding out your MRI results. And then I talked about how I didn't know what the reality was in my insides, and I thought that was better, because it was much easier to deal with. And do you know, he disagreed. I was quite surprised.

He said that although it was harder in the short term, in the longterm it was actually best to know all the details, and the sooner the better. He said that if I had known exactly what I was dealing with - all the details, exactly what the extent of the scarring was, the extent of the entrapment, the extent of the damage - I'd have come to terms with this a whole lot sooner.

So I've been thinking about that, today. And I know he's right. I'm now thinking about whether or not I want to know these details myself. And I'm also wondering about whether there is a little part of me that has still been thinking that maybe it was going to get better eventually. I think that there is, and that worries me somewhat.


But it's a terribly hard thing, to have all that dropped on you at once.

I do wish I could find something helpful to say. And I hope that you have a better day tomorrow. We'll be thinking of you.

[Barb]

Oh, I feel terrible if I have made you second guess your decision on your treatment. It really is such an Individual decision. For myself, I began researching right after my first surgery because I felt like I did not ask the right questions going into that surgery, and it was such a disaster that I promised myself I would always be very informed going forward. I certainly have not made any decisions about what to do now that I know, but I do know I have to be more careful about sitting, squatting, bending etc., as I know with the nerve being entrapped, it could cause more damage if I do those things.

You have been feeling so good with what you are doing. You may not have an entrapment. Do you have pain with sitting? That is my biggest problem. I do miss going to movies and traveling. We go out to dinner sometimes and I sit on my cushion. My embarrassment regarding using a cushion has gone out the window. I do it now without thinking about it.

I have been feeling a little better today. I am more tired than usual, but I think I am just emotionally fatigued right now. The weather here is so beautiful and warm that I can't be too sad when I look around at all the flowers and trees

Take care!

[Violet M]

Hi Barb,

Sorry to hear of your recent news on the MRI and I wish you the best in finding the right treatments.

My entrapment was also in the perineal branch although I never had a Potter MRI showing that -- I was just told that by the physician who did my surgery. I also had chronically strained ligaments with a lot of SI problems. Taping, SI belts, etc. were ineffective and I was not able to do core strengthening exercies because they were too painful and aggravated the pudendal nerve.

Was there any mention in the MRI report on what might be causing the entrapment?

Violet

[calluna]

I will leave the technical stuff to Violet, but I will be interested to hear the answers.

Cushion - now that's about my level! - (yes, textbook PN here, pain when sitting, I only sit with my cushion and it goes everywhere with me, I am not going to try sitting without my cushion even with these excellent meds) - I carry my cushion in a soft black fabric bag. Actually it says M&S on the bag. People in the UK will recognise this as the logo of Marks & Spencer, I don't know if they are on your side of the Atlantic or not, anyway they are a department store. I just put the bag on my chair and then I sit on the bag. Nobody has ever commented. When I carried the cushion separately, people asked about it several times. And honestly, why did they think I was sitting on a special cushion. Yes, because I needed to. I was not about to give them the details, and I did not much like knowing that people had noticed. With the bag, nobody has ever said a word.

And yes, I am certain that my treatment choices have been correct, not to worry, I'm just daft.

You take care too, Barb. Freezing cold here, we're having a very late spring..... but it has just about arrived now. Well, we hope it has.

[Barb]

Hi Violet,

I have read so many of your posts and it gives me such hope that your surgery helped you. The summary of the MRI said "extensive pelvic floor scarring affecting the levator ani muscle and the fat planes of the lower portion of the anal region and the vulva, encasing inferior perineal branches of the pudendal distribution as well as the posterior margin of the dorsal nerves to the clitoris.". She goes on to say there is no scar encasement of the pudendal nerves adjacent to the sacrospinous or sacrotuberous ligaments, nor in the posterior margin of Alcock's canal.

I have no one here to really explain the MRI. My gynecologist requested the MRI as a favor to me. I asked him if he would do it after I read about Dr. Potter. I have not talked to him and I'm not sure he could help with all the explanations about where I am entrapped.

I would love it if you could give me help in understanding where the inferior perineal branches are. Is it where the superficial transverse perineal muscle is? I do know the location of the dorsal nerve to the clitoris.

I am sure this all happened because the mesh was implanted and then removed. The surgeon at UCLA said there was a lot of mesh and he had to work really hard to get it all out. He said it was like cardboard. So sad.

You really do feel alone in dealing with this as it is so hard for others to understand.

Do you know anything about the anterior approach or Prof. Aszmann? Is that what Dr. Bautrant does?

Forgive me for all the questions. Thank you for any help you can give me.

[Barb]

Calluna, would you mind telling me what kind of cushion you use? I am always looking for a better one than mine. I can not find a comfortable one with the middle out.

Sorry it is cold right now.. Hopefully it will warm up soon

[calluna]

This is my cushion. I have two, this one, which lives in the car, and another one which has a padded cover, this is the one that gets carried about with me everywhere. Not that I go to many places! Amazon doesn't have the one with the cover in stock at the moment - these cushions do seem to go out of stock from time to time, which always worries me when I notice. They all come with a little pump like a bicycle pump, and instructions about how to inflate them to the right amount. Not too much is the key, I think. Anyway, they are very helpful for me. They are strangely wobbly when you first sit on them, which always surprises people.

[Barb]

Hi Violet,

I hope you saw my post above showing the results of my MRI, and asking some questions about what it means. I also wanted to ask you if you are able to sit since your surgery and if you still have problems with the ligaments around your SI joint.

Now that I know I am entrapped, I have been feeling pretty hopeless. I did go to PT yesterday, but now I am afraid to do core strengthening as I am afraid it will irritate the nerve. He did dry needling and I am always sore the next day.

I know I need to be more positive, but it sure is hard.

[Violet M]

Barb, it sounds like according to the MRI the scarring is showing up more towards the anterior or distal end of the alcock's canal which I have heard is the area Aszmann deals with. My understanding is that Bautrant deals more with the proximal end of alcock's and ligamental grip at the ischial spine. A nerve block might help to confirm the location better but probably would not be worth it unless you are strongly considering surgery.

Some things to keep in mind are that the Potter MRI is not 100% accurate at diagnosing this condition and secondly that more surgery contributes to more scar tissue so you may want to consider all of your options carefully and get several opinions if you can. In my case it was fairly clear cut because the hardened ligaments were compressing the nerve and I did not have a history of pelvic surgery. Ligaments, SI dysfunction, and pelvic misalignment played a major role. I can sit for many hours now but I do have to be careful about heavy exercise due to continued ligament/SI problems.

The MRI would not necessarily show a mechanical problem such as a lax ligament that is impinging on the nerve. If that's causing your PN then PNE surgery to release the nerve might be your answer but it's definitely a last resort treatment. I'm not sure if Azmann's surgery deals with the ligamental grip area.

Violet