I'm back :(

[Positivepoppy]

Thank you for your kind words, was reading the post early hours of the am as in so much pain and not able to sleep and panicked and post frightened me. 3 months post surgery and this w eek the pain and flare ups have intensified so very down and concerned. Hopefully it will start to ease but read post at a time when I was already questioning my decision to have surgery. This forum and similar ones have helped me hugely and i hope by posting my experiences I may have helped others. When you read a post that sounds more factual than opinion and it relates to your journey it can be frightening.

[Barb]

Hi Positivepoppy,

I agree with Karyn. Please let all the good posts encourage you with your decision. I had the TG surgery 6 months ago and I am doing well. It is still a long road, but I feel it was the right decision. There will always be days you will second guess your decision until you are pretty far down the road.....a year or two. I have to remember this too. As someone said....you have to gauge your recovery in months and years, not days and weeks.

I had SI joint hypermobility and pain on my right side before my surgery, and that is the side of my surgery. Now that side is completely stable and I have no pain or inflammation around the PSIS. I am having some inflammation in the other SI joint, but my point is.......the ligament that was notched in the surgery is completely stable now....so everybody is different.

Please try to stay positive. I have felt the same fears....it's only normal. When I let it overcome me, I stop and do something else.......watch a funny movie.....listen to music...or take a walk. Swimming is good too.

We are all on a journey with this condition and you are right, this forum can be so helpful and scary at the same time. I hope you can continue to stay positive and celebrate the good days and try not to let the bad days get you down.

Hang in there
Barb

[GregT]

Thank you for your kind words, was reading the post early hours of the am as in so much pain and not able to sleep and panicked and post frightened me. 3 months post surgery and this w eek the pain and flare ups have intensified so very down and concerned. Hopefully it will start to ease but read post at a time when I was already questioning my decision to have surgery. This forum and similar ones have helped me hugely and i hope by posting my experiences I may have helped others. When you read a post that sounds more factual than opinion and it relates to your journey it can be frightening.

PP,

Many times people have to just get off of the forums because they get like you got, sad and depressed about what they read. Listen, you have to expect an up and down recovery just because of the surgery and not at all related to your emotions. When I had surgery, it was when this was all beginning (2001), the first of the PN websites, etc., and there really was very little negativity initially. But, as other surgeries and surgeons were made known, differing opinions began to develop. Many people will defend to the death their positions, and many of them stick with what they had done because it may be difficult to go against their choice, especially if they are still recovering from their surgery.

You need to do your best at not allowing the negative possibilities to get you down, and if that means to stay away from the day to day forum reading on the forum, then do it. Just keep in touch with a few of the close friends who you've come to know and trust. In time, you'll want to come back because you're maybe stronger mentally or your surgery has been proven to be a successful one. I'm very glad that I brought this post back up, even if all i did was to let you know that what this one person (Ali) posted was just his opinion, and that some people's opinions might not be actual facts, or they might be greatly exaggerated.

Hang in there and we hope to hear wonderful things from you soon.

Greg

[Abica1]

OMG...so glad I found this forum. Not really good at forum's, this is only the second one I've ever done.
I've been suffering 5 years or longer from PGAD, using ice and lidocaine as the most effective treatments.
Tried some oral medications, but not really working.
I'm really tired already of reading. I've been reading for about 5-6 hours today.
Has anyone ever experienced PGAD on only one side...mine is totally on my left side?

[Violet M]

Has anyone ever experienced PGAD on only one side...mine is totally on my left side?

Hi Abica. My PGAD was worse on one side than the other. There is a long thread on PGAD where you might be more likely to get answers from PGAD patients. http://www.pudendalhope.info/forum/view ... =48&t=1590

Positive Poppy, it's really common to have a flare-up around the 3-4 month period when the nerve is waking up so I wouldn't make any conclusions about the success of your surgery at this point. Just because you had the TG approach doesn't mean you will develop pelvic hypermobility from it. If you had a modified TG approach, as many of the surgeons provide now, it shouldn't be a concern anyway. I think the fact that you are able to swim and your pain is less angry now shows great progress.

Barb, you say your ligament was notched. That sounds like a modified TG approach. The people I know who developed hypermobility post TG surgery had the ST ligament completely severed and not repaired.

Greg, there were definitely more than 2 people on your forum who posted that they developed hypermobility or SI joint dysfunction/pain after TG surgery. I know people who have told me personally that they developed SI problems post TG surgery. I don't think people make these things up. If it wasn't a concern, why would 3 of the major TG surgeons in the US have developed and opted for a modified approach that spares the ST ligaments -- including Dr. Hibner, Dr. Conway, and Dr. Antolak? It's a fact that these three surgeons offer a modified TG approach to spare the ST ligament from being completely severed. It's not being negative to point out facts.

I don't believe in hiding information from people. Especially before surgery, I think most people want to know the facts. The fact is -- some people have said they developed hypermobility after having the ST ligaments severed during TG surgery. It's not my opinion that people said that. It's not Ali's opinion. I don't know if the TG surgery caused their hypermobility. People can conclude what they think makes sense and some patients concluded it was from their ligament being severed because they didn't have hypermobility or SI joint pain prior to that.

I realize it makes some people sad to read negative things on the forum but if we only allow success stories on this forum, we aren't going to have a realistic picture of what PN is like. If you are struggling with pain when you come on the forum and you are the only one who is still struggling when everyone else is doing great, that could make you feel pretty hopeless and alone. The great thing about this forum is the stories of people who have gone through a lot of pain but have continued to fight until they found what worked for them. People like Amanda, nyt, Lottanerve, Karyn, Catherine, Ezer, RJR, Hermajesty, and many, many more. There are some truly inspiring people on this forum.

Violet

[Karyn]

Well said, Violet!

[Barb]

Hi Violet and Karyn,
I don't want to hijack this thread, but I have a question and thought you still may be monitoring this thread. I am doing very well for 6 months post TG surgery, which I have said. The nerve pain seems much better with fewer flares....which is the good news. However, I am still having the ischial tuberosity pain, which I had before the surgery. It is not hamstring tendionitis as we thought. Dr. Potter did see scarring of the muscle that attaches to the ischial and thought the nerve may be entrapped there, and the PT feels the scar and tried some Manuel therapy, but I think it's too soon after surgery and it hurts too much.

My question is have you heard of pudendal nerve block of the perineal branch and is it done in the superficial transverse perineal muscle? I wouldn't think of this for some time as I want to wait and give the nerve time to heal. Prof. Aszmann went from the proximal end to the Alcock's canal, so I know I need to give the nerve time to heal. Just wondering.......sure would like to sit more comfortably. However, I am very lucky because I don't have that gnawing pain in the vagina

Wishing everyone well and hoping everyone can find that solution that allows for more comfortable days.

Positivepoppy.....if you are reading this, I am sending lots of cyber hugs and hopes that your flares will be fewer and less intense. I also had that at three months. It does get better

Thanks!
Barb

[Positivepoppy]

Hi Violet thank you for your response and this forum and similar ones have been a life line. I have also posted numerous posts citing my experience in the hope that it may help others in a similar situation. Unfortunately I did not have modified TG surgery both ligaments bilateral were severed and removed. My PNE was sadly caused by a hysterectomy last June and felt afraid that decompression surgery may cause more problems. I have never heard that the removal of the ligaments could potentially cause further mobility problems and was categorically told by the surgeon thAt I didn't need these ligaments and it would make no difference to my core stability. Think reading your post and others I was a little naive and because I had surgery so quickly after I was given a diagnosis I didn't research thoroughly.
Like you said the fact that I am able to swim gently several times a week is positive and I always refer to my condition as " when I get better not if I get better" I am a really positive person my glass is always half full but last week a had the most debilitating flare up that had me bed bound and crying in pain for 5 days and I got scared. I would welcome any information on common health repercussions after ligaments are removed as I was not aware there were any.
It is wonderful to read the different journies that people have been on and I find inspiration in all of them as everyone is willing to share their experiences good and bad and information is empowering and it is a tremendous help to learn you are not alone.

[Positivepoppy]

Hi barb
Huge thanks for your kind words really hit me for six last week but easier today thankfully. Good to learn that post op 3 month flare ups are not uncommon so will take comfort.
I really hope you are doing well and its great to hear your pain and flares are less angry. Take care and hope you continue to improve

[Violet M]

Unfortunately I did not have modified TG surgery both ligaments bilateral were severed and removed.

Well, a lot of people don't have problems after the traditional TG approach so there is a good chance you will be just fine. I think you are right about being positive, and while it's good to be informed, it's also good not to borrow trouble, right?

My question is have you heard of pudendal nerve block of the perineal branch and is it done in the superficial transverse perineal muscle?

I think people have mentioned perineal branch nerve blocks but I'm not sure how it would be done because the perineal nerve branches vary from person to person.

I wonder if it would be possible for you to have a steroid injection directly at that scar tissue that your PT can feel, in order to dissolve it. Did you have bursitis at the ischial tuberosity ruled out?

Violet