Confused. Adhesions/pudendal neuralgia

[xcht]

I've been suffering with chronic pelvic pain for two years with no diagnosis.

I've had MRI's, X-rays and 2 laparascopys. During surgery they found bowel adhesions. Which would explain my seriously distended stomach. I look pregnant.

What it doesn't explain, for me, is the pelvic pain. It is very low down and after doing lots of research through this site I have found information on Pudendal nerve entrapment. I have all the symptoms of this and I've found a Doctor in the UK who knows his stuff.

I don't know whether to go through with paying to see him privately, as it may be the adhesions causing all my pain, but i'm not convinced. Especially as I've been told the scar tissue is high in the stomach on the right where my pain is left sided in my pelvis.

Could it be referred pain? I take gabapentin and it does help, i'm confident it's nerve pain.

I'm just wondering if anyone on this site has bowel adhesions and lower pelvic pain which worsens at period times?

I'm positive I haven't got endometriosis as the last laparascopy was performed by an endo specialist.

Just a bit lost again as the pain is still as bad as ever and I don't know where to go next

[Anthonyian]

Hi chetchie it was 3years before I was diagnosed with pudendal neuralgia dr sent me MRI scan 3 injections numerous pain killers and scans on my bladder bowels and I was at my wits end as nothing showed up then they sent me to painmanagement and the consultant told me what it was they tried with all types of meds and then I paid private to see mr wong at the spires in Bristol that was 3 years ago I am still I pain but not as bad as before op My consultant as put me on 250mg am 200 at 8pm and out of all meds I tried these are the most effective I hope you soon get some relief as the pain is horrendous kind regards

[Anthonyian]

Hi chetchie it was 3years before I was diagnosed with pudendal neuralgia dr sent me MRI scan 3 injections numerous pain killers and scans on my bladder bowels and I was at my wits end as nothing showed up then they sent me to painmanagement and the consultant told me what it was they tried with all types of meds and then I paid private to see mr wong at the spires in Bristol that was 3 years ago I am still I pain but not as bad as before op My consultant as put me on 250mg am 200 at 8pm and out of all meds I tried these are the most effective I hope you soon get some relief as the pain is horrendous kind regards

[xcht in reply to Anthonyian]

Can i ask how you were diagnosed??

[PurpleQuest]

There is a theory that if there is tightness or thickening (including adhesions) in the fascia (sheet of fibrous connective tissue that runs throughout your body), it can pull on other areas and cause pain. There is a link between a relaxed stomach and a relaxed pelvic floor. Whether this is enough to cause pain rather than contribute or exacerbate, is another question, though. I'll pm you later with more.

[Mamaofthree]

I have pudendal neuralgia and like you, went through endless tests with no answers. I am in so much pain ALL THE TIME! During my period it's just downright disabling. I don't think it's referred pain and gabapentin doses have to be so high to even help.

[mdonohue169]

I've been through all this and nothing works. Most days I consider suicide as only option. Pudendal shots were useless. I have neuropathy through my whole body am losing the muscular power in feet and hands. Lost use of one leg but the pain since my hysterectomy for long undiagnosed endo seems to be the trigger. Nerve something or other is only diagnosis. Tired of not being able to hold anything, be able to stand up straight, lie down without having knees slightly bent, painful BM's, incontinence the humiliation of being probed by eternal clueless specialists - it's been 17 years now and I've had enough. I'd like to hear one hopeful message on this blog but I think I'm going to just quit it.

[Alyssa5 in reply to mdonohue169]

Md169,

I'm so sorry you have dealt with these issues so many years... I'm 10 months in and I have lost the will to live. Chronic pain is so depressing

[Kap710 in reply to Alyssa5]

I was saying that today to my husband.

[xcht in reply to mdonohue169]

It is so hard to deal with. 2 years and there hasn't been a day without pain, every day I say I cant do this anymore! Cant imagine how you're feeling. I have found lots of info from this site to be honest and I have booked in with a specialist tomorrow who knows about pne. I'm hoping he will have some advice. The good thing about this site is that there are people who are in the same position as you. Feel free to message me at any time if you want to talk

[mdonohue169 in reply to xcht]

They may be honest but I see no answers. As for specialists all they are are wastes of time and money and the trips to see them hurt

[Hidden in reply to xcht]

careful about the so-called pudendal decompression surgery, A LOT of people have gotten worse from that surgery

[Karsbu in reply to xcht]

What did your specialist tell you?

[melisano1heart in reply to xcht]

HI ! I KNOW HOW U R FEELING ! GUESS WE HAVE TO HANG IN THERE ? DO U KNOW HOW? I HAVE DEALT W INTRACTABLE PAIN FOR OVER A YR! NO DR CAN DIAGNOSE OR OFFER ME ANYTHING! I HAVE SEEN 7 OR SO-! I HAVE COLLAPSED PELVIC FLOOR-CYSTOCELE & RECTAL PROLAPSE ! BUT SINCE ADHESIONS HAVE BEEN A PROBLEM FO ME BEFORE-I FEEL THIS IS WHAT THEY R MISSING! I WANT OUT OF THE PAIN AND DISABILITY OF IT ALSO!! SO I UNDERSTAND HOW U FEEL ! I WILL PRAY FOR UR HELP ALSO! THANKS FOR SHARING !! (FORGIVE THE CAPS) ! MELISSA IN FLORIDA!!

[Hidden in reply to mdonohue169]

you can get a pain pump as a last resort or a spinal cord stimulator

[mdonohue169 in reply to Hidden]

5 days in hospital trying spinal cord stimulator. Whole body numbed and tingling EXCEPT TO PELVIC AREA AND RECTUM where scar is. Got impacted again and went into agonizing pelvic pain blood pressure shot up had to have bowels manually evacuated which reduced some of the pain. Doctor took out stimulator this had failed too.

[willemine in reply to mdonohue169]

Sorry to hear the spinal cord stumulator didn t work conpassion !

[Debra13 in reply to mdonohue169]

Hello,

I’m with you been to hell and back for 17 years now. Please don’t do the unthinkable. I just had a procedure done but I’m waiting for the full 6 weeks to tell this site whether it has worked 100% or not. I will tell you this. I trusted this doctor enough to do this very new procedure on me and I let him do surgery to remove scar tissue from a botched vulva vestibulectomy. Please everyone on this site hang on tight. If you don’t believe me. I’ve been on this site for a very long time. I have relief already even with stitches. I have to be honest though I’m still on pain medication but that wasn’t even working anymore. I just don’t want to give you all false hope. Right now my pain is better on my medication but unfortunately I was diagnosed with interstitial cystitis now because this doctor did a cystoscope with fluid on me. I’ll give you an example of how I know I’m better. I haven’t been able to sleep for more than 2-3 hours a night in the last 4 years. I slept 5-6 hours and only woke up because of the pain in my bladder. God bless all Deb. ❤️

[gemd]

I have the same symptoms as you after almost 5 years I am still no further foward and at my whitts end to be honest tens machine I have tried is useless to me I am waiting on a perception for the same medication as you let me know if you find out anything else about yout pain I will keep you updated about mine going to c my gyno soon x

[xcht in reply to gemd]

it's just awful isn't it. today has been the worst day in a long while for me. I'm on tramadol gabapentin and morphine. my back is in agony and my pelvis feels like 10 stone.

I'm going to have a nerve block near the pudendal nerve to see if that is the cause of my pain. I have to pay for it privately but if it works then it'll be worth it. I will let you know if it helps

sorry you're in pain, I feel so sorry for everyone on this site with no answers because it is pretty much soul destroying haha.

I'll let you know if I get any more info xx

[66crusader]

Be careful with the nerve block, my mother and I both have PN, she has had a nerve block in London by a specialist who is very PN a aware and she is so much worse since having it, her bladder has stopped working and now she has a permanent catheter. I also no of two other ladies who have been made worse.

[PandoraPenguin]

I had bowel adhesions removed in 2012. I had started with pain that, at times, radiated across my abdomen. At the onset of my pain it did worsen at the time of my period, the initially thought I had an ectopic pregnancy, eventually it just became constant. Did they say why they did not remove them during the lap? My Dr thought I had endometriosis and did the lap and found adhesions but no endo. Even post-op I was in less pain than when I went into hospital that morning.

[xcht in reply to PandoraPenguin]

My pain is specifically in my pelvis though so I'm just confused.. As the adhesions are high and the pain is low on the left.

Nope he didn't say why he didn't remove them! Just discharged me and sent me to pelvic pain clinic just dont know what's going on lol

[Kap710 in reply to PandoraPenguin]

I have seen 3 Surgeons a no all 3 tell me adhesions don't cause pain. I've been in the hospital 3 time because of this non existent pain. All test are neg. so frustrated

[Desperateforrelief in reply to Kap710]

Adhesions can cause pain. It depends on where they are located and what they are pulling on. My daughter had her ovaries engulfed in adhesions. She found a lot of relief once removed. Of course they can come back.

[zagemeel in reply to Desperateforrelief]

Could you tell me more please as I also have dense adhesions in which my ovaries with cysts are engulfed. I had a partial hysterectomy in 2012 with a huge fibroid. In 2014 they found the cyst on ovaries but could not take them out due to the adhesions. I am still awaiting surgery now. The doctors seem not keen on doing it. But I suffer so much pain and swollen lover belly. I swell up sometimes over 115 cm around the belly. I am in a lot of pain.

[Desperateforrelief in reply to zagemeel]

My daughter had the adhesions removed via laser throuh endoscopic surgery. She also has endometriosis which was removed by laser. It is true that adhesions grow from scar tissue. The more surgery, the more risk of adhesions. They have not discovered why this happens. However, because her ovaries were covered in scar tissue they were glued to the uterus and it caused a lot of pain. When they free her ovaries from the adhesions they were free to float in abdomen, thus movement, etc. less painful.

[Xindy in reply to Desperateforrelief]

I have had adhesions removed twice now over the past 16 years and am just waiting results of my latest CT scan but my colorectal surgeon thinks it is adhesions causing the intense burning pain. Adhesions are extremely painful for some and not others. Once they are removed I do get totally pain free and get my life back. It is a matter of finding a good surgeon. I have just been put on amytripline as my pelvis is so tight that is intense burning pain almost like having cystitis but without the bacteria. I have been on magnesium acetate for two weeks but still finding it is difficult to empty fully and with the adhesions I just feel that I am truly inflamed in the who pelvic area.

So I do believe that if adhesions are removed carefully, it does help tremendously, unfortunately you have to go private to get them removed and it is costly. There is hope at the end of the tunnel though, I remember never being able to sleep and being exhausted all the time, but my body learn to adapt to standing up to work. the only thing that does give pain relief is predisnolene - this helps me when I have had a flare up.

[Karsbu]

What did the specialist say in UK?

[lucylocket2222]

My understanding is that when I had the major surgery for the adhesions the specialist told me that they cannot remove adhesions as they are scar tissue, all they can do is divide them to ease the tethering they cause in the pelvis/bowel etc. However I have since learnt that dividing adhesions does double the adhesions. I don't know why you think they were removed as that is an impossibility. For example if you had a scar (which is what an adhesion is) on your hand, surgical removal would only leave another scar. That is my understanding.

[Krisssy]

I had a bowel resection followed by two emergency surgeries where the scar tissue(adhesions) wrapped around the bowel causing a blockage. Sometime after that I had what I would call pain in my urethra and cliteral area coupled with frequency and urgency. I've been to many many doctors for many many years being told it's Pudental Neuralgia, pelvic floor dysfunction , and pelvic floor spasms. Tried every medication , shots and PT. Nothing worked. Going for nerve block in two days. I ask every Dr. If it's from the scar tissue, and they say they don't know ?? If they don't know, who does know ? This condition has hurt my life greatly!

[AnonStricture]

Which UK doctor are you using?

[willemine]

As you mensioned yourself edhensions are not been seen on mri's or scans you can have also tissue in the bottum of your pelvic. I had it true the hole of my pelvic it was frozen because of the tissue and there was nothing been seen before the surgery for my overys .( sorry my englisch is bad i am from the Netherlands )

[AdeleS586]

I was diagnosed with pudendal neuralgia in 2015. Symptoms began in August but I wasn't diagnosed till the end of the year. It's a long story about how I was diagnosed, but my diagnosis came about mostly because of my sister Googling my symptoms. When I told the Physicians I thought it could be pudendal neuralgia, they were able to diagnose the condition and test me based on my sisters findings. After several CT and MRI scans, they did an EMG scan. Once everything was confirmed, the recommendation was that a go to a pelvic floor physical therapist. When she evaluated me, my pelvic floor muscles were very tight.

After going through and finishing pelvic floor therapy and March of 2016 my condition improved greatly, partly because I was on my feet everyday for my job. I worked in retail.

I also do therapy intravaginally with a wand to keep my pelvic floor muscles more relaxed.

My symptoms reared its ugly head again when I took a job last summer in which I sat most of the day which of course triggered my symptoms all over again. With the combination of a sit-stand desk at work, another round of pelvic floor Physical Therapy This Time by a different therapist with a different approach, I have been able to go a day or two without doing my home therapy and not backslide as far as my symptoms are concerned.

[willemine]

Hi xcht i had mayor adhesions from endometriosis my hole pelvic was full they cold it frozen pelvic by endo. All my organs grows to eachother the dokter released it and now i have pundendal neuralgy and can t sit . So compassion !

[brycesara]

Hello are you still on the forum? I wanted to ask you a couple questions about your adhesions. How did you get adhesions? From a previous surgery? An accident? My husband has similar symptoms of PN and he has a fissure but unsure if he has adhesions or not. Any help appreciated.

Thank you, Sara