I can’t take this anymore

[PainNoPain]

Hey - I haven’t posted in a while and I’m looking for some support…..

I have struggled with pelvic pain for a long time , have been through rounds of surgeries on hips and groin, this was about 10 plus years ago and the pain has come back with a vengeance….i had it under control with walking and swimming, saw a pelvic specialist told me to stretch , it made everything worse, I was on nortriptyline so pain specialist added gabapentin 900 mg it helped but side affects were awful with weight gain and acid reflux. I had food poisoning last December and a month of straining made everything 100 times worse….im still on 75mg nortriptyline and I don’t know what to do…I’ve been told I have a tight pelvic floor, but I feel like I’m sitting on a ball, I have pressure in my anus with goes into my perineum…I have no erectile dysfunction, no testicle or penis pain, no pain after sex, just pressure in anus with radiates into my perineum when sitting and lying down….ive been told I don’t have PN because they done an internal check pressed on the nerve and also because I don’t have pain up until the top of my penis….i don’t know what to do anymore I have Lyrica from gp but haven’t started it yet…. I feel like a nerve is blocked , something is not right.,..I am an anxious wreck….and sometimes I just wish not being here is probably best for everyone……I have a call with dr Eric beurant to discuss my symptoms…I don’t think people here understand PN in the UK . I want to get a proper scan to see if it is trapped? I’ve asked my pain specialist for pudendal blocks again but last time he said because I don’t fit the criteria it’s best not to do it so we don’t irritate things…..I’m broke guys I really I am I am so tired I am fighting everyday from stretches to strengthening to meditation to everything ….i don’t know what to do anymore….i feel like the nerve is trapped , does anymore else have these symptoms?

I forgot to add I had a lower spine and pelvis 3T mri everything was clear apart from hip burisitis on both hips and gluteal tendinopathy…..so phisio is telling me to strengthen?? I am so confused…..

[April]

Hi Painnopain,

I'm so sorry about your pain. I totally understand the exhaustion from it all. It's so much harder when health care providers don't even know what is going on. I think your primary symptom (pressure in anus with radiates into my perineum when sitting and lying down) does sound like pn. I don't think those internal checks are foolproof way to diagnose this. Do you have burning and/or throbbing pain?

It sounds like you discontinued the stretching of the pelvic area---I think that is good because there is a possibility that if your nerve is entrapped, the stretching could pull it in a way that makes the pain worse. And it sounds like it did make it worse for you.

You asked if you could get a scan to determine if it is entrapped. It is usually difficult to see entrapment on an MRI, but it's not impossible to see it so it is usually a good idea to do an MRI. It can also help you rule out other problems, although I see you did have a pelvic MRI that didn't show anything. You could request an MRI that follow's Dr. Hollis Porter's protocol. She's a radiologist in New York who developed an MRI protocol designed to identify pudendal nerve entrapment. I think you can just email her office and someone will email you the protocol in a set of attachments. You then have ask the clinic doing the MRI if their technician can follow the protocol.

A couple of other thoughts: Lyrica is very similar to gabapentin, so if you didn't like gabapentin, you may not want to go on Lyrica. I was on both nortriptyline and amitriptyline (not at the same time). I switched from one to other a couple of times, and they were similar and both seemed to help a bit. So, you could ask your pain doctor about the possible benefits of switching from nortriptyline to amitriptyline.

Also, you could try to do a virtual appointment with Dr. Hibner to see if he has any insights.

Take care,
April

[PainNoPain]

Hi April

That’s really helpful.

Sorry I am all over place , haven’t slept in months. What Dr Hollis clinic contact so I can email them?

I’ve spoken to a few people who are on Lyrica with my symptoms and they said it’s worked wonders. They were also on Gabapentin and switched….im on 50mg now of nortriptyline and 50mg of Lyrica at night to see if this will help.

I’ve also spoken to people who were on gabapentin and when they stopped everything came back with a vengeance and calmed down after a little while so maybe that’s what I’m experiencing as I stoped gabapentin a couple of weeks ago..,.I am so tired…

Many Thanks for your time reading this…
C

[PainNoPain]

Is this the protocol?

I have found this page on here

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

Many Thanks
C

[Violet M]

Is this the protocol?

I have found this page on here

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

Many Thanks
C

What you listed there is the prescription your physician should write if you are going to Dr. Potter in New York to get the MRI.

The Hollis Potter protocol is different. It is related to the software settings that enhance the imaging of the nerve, so it would be much more in depth than that and only your radiologist would be able to understand it. In the past Dr. Potter has indicated that she is willing to share those software settings with other radiologists, so hopefully that is still the case.

Regarding lyrica and gabapentin.....I was not able to take gabapentin due to the side effects and it didn't help my PNE symptoms. Lyrica wasn't available until after I had recovered from PNE but I have tried it for something else and did not have the bad side effects that I did with gabapentin. So, I think it is worth trying, and hopefully it is working for you better than gabapemtin did.

I agree with April that stretching could be a problem if you do have an entrapped nerve. I could not do stretching when the pudendal nerve was still entrapped. It's possible to have just one branch of the nerve entrapped so that you only have symptoms in the distribution area of that branch of the nerve. Or you could just have tight muscles impinging on the branch of the nerve that innervates the anal sphincter. Have you tried any muscle relaxing suppositories?

Violet

[PainNoPain]

Thank you violet

I have spoken to both dr Eric Bautrant and Dr Boolen - went through my symptoms in details , plus all my medical history and they ruled out PN. My symptoms are piriformis syndrome with some lavatori ani and my sit bone pain because of the muscle imbalancement is due to the obturator muscle which sit next to them….. so they have advised i take medication for muscle like Amitriptyline which I have started and work on my piriformis , I can swim and do other activities just not the ones that aggravate everything….i am so happy but so down at the same time….i am so tired it’s a battle everyday….i just want to give up sometimes and just take the meds….i am going to try and go swimming which well tolerated with pelvic floor dysfunction and stick to Amitriptyline and see how that goes….

[stephanies]

PainNoPain,

If your pain is in the distribution of the PN, it could be a nerve issue. Sometimes muscle tension can be the cause of nerve pain. Strengthening exercises and certain stretches cause me terrible flare as do pudendal nerve blocks. I do find that meditating and doing breath work can help quiet some of the pain.

Stephanies

[eraser]

Hey - I haven’t posted in a while and I’m looking for some support…..

I have struggled with pelvic pain for a long time , have been through rounds of surgeries on hips and groin, this was about 10 plus years ago and the pain has come back with a vengeance….i had it under control with walking and swimming, saw a pelvic specialist told me to stretch , it made everything worse, I was on nortriptyline so pain specialist added gabapentin 900 mg it helped but side affects were awful with weight gain and acid reflux. I had food poisoning last December and a month of straining made everything 100 times worse….im still on 75mg nortriptyline and I don’t know what to do…I’ve been told I have a tight pelvic floor, but I feel like I’m sitting on a ball, I have pressure in my anus with goes into my perineum…I have no erectile dysfunction, no testicle or penis pain, no pain after sex, just pressure in anus with radiates into my perineum when sitting and lying down….ive been told I don’t have PN because they done an internal check pressed on the nerve and also because I don’t have pain up until the top of my penis….i don’t know what to do anymore I have Lyrica from gp but haven’t started it yet…. I feel like a nerve is blocked , something is not right.,..I am an anxious wreck….and sometimes I just wish not being here is probably best for everyone……I have a call with dr Eric beurant to discuss my symptoms…I don’t think people here understand PN in the UK . I want to get a proper scan to see if it is trapped? I’ve asked my pain specialist for pudendal blocks again but last time he said because I don’t fit the criteria it’s best not to do it so we don’t irritate things…..I’m broke guys I really I am I am so tired I am fighting everyday from stretches to strengthening to meditation to everything ….i don’t know what to do anymore….i feel like the nerve is trapped , does anymore else have these symptoms?

I forgot to add I had a lower spine and pelvis 3T mri everything was clear apart from hip burisitis on both hips and gluteal tendinopathy…..so phisio is telling me to strengthen?? I am so confused…..

It is awful, suspect it will be too late but pregablin is generally far superior in terms of relief. If you are on gabapentin you can do a direcy switch to pregablin, by ratio.

[Balenul]

Thank you violet

I have spoken to both dr Eric Bautrant and Dr Boolen - went through my symptoms in details , plus all my medical history and they ruled out PN. My symptoms are piriformis syndrome with some lavatori ani and my sit bone pain because of the muscle imbalancement is due to the obturator muscle which sit next to them….. so they have advised i take medication for muscle like Amitriptyline which I have started and work on my piriformis , I can swim and do other activities just not the ones that aggravate everything….i am so happy but so down at the same time….i am so tired it’s a battle everyday….i just want to give up sometimes and just take the meds….i am going to try and go swimming which well tolerated with pelvic floor dysfunction and stick to Amitriptyline and see how that goes….

Did you met them face to face ? Else is hard to exclude....what they consider is your problem if not pn/pne ?

[eraser]

PainNoPain,

If your pain is in the distribution of the PN, it could be a nerve issue. Sometimes muscle tension can be the cause of nerve pain. Strengthening exercises and certain stretches cause me terrible flare as do pudendal nerve blocks. I do find that meditating and doing breath work can help quiet some of the pain.

Stephanies

If it’s just caused by muscle tension then it should be easy to resolve and won’t necessarily return. Anyone that says it is due to this, then I would seriously doubt especially if it happens repeatedly. Breathing exercises were a waste of time for me. Muscle imbalances, sounds like the real answer is that they don’t known.