Hello all,
I am new to the forum but have read most of the information on the pudendal hope site. I am sorry for the length, but there's a lot of backstory to my situation:
Since the birth of my fourth child in 2/2014 I had heavier and heavier periods and was becoming increasingly worn down and wiped out. The periods were so bad I'd use a whole box of extra super tampons and pads together every 2-3 days for my 10-14 day periods. It was a monthly nightmare by the time I made appointments with my OBGYN for an exam and my GP for a physical. Bloodwork indicated severe anemia (Ferritin level of 2) which was making me very sick. I had my tubes tied after I had my last baby, so we talked about immediate ablation as the periods were slowly killing me and diet changes to add iron were not working. After an ultrasound to rule out fibroids and other conditions, I went in for an ablation 9/28/18. When I woke up from the procedure I was told that the procedure was not performed because my uterus was more than twice the normal size. The tool used would not even deploy for them to try. Hysterectomy was the only thing left as we had tried birth control, patch, ring, mirena in the past with no success.
My laparoscopic supracervical hysterectomy was 11/9/2018 (I kept my ovaries as I am only 35). I was assured that because I am so young and healthy I'd be back to work no more than 4-6 weeks later. I planned to be back to work no later than the week of Christmas.
The 4ish hour surgery was deemed a success with no complications. My doctor was not there when I woke up, but another assisting doctor was there adjusting my catheter as it was not draining properly. They moved me from recovery to a room, where I stayed for about 24 hours with little attention from nurses other than when my BP dropped 75/45 for a while due to the anesthesia. They were understaffed so they didn't get the catheter removed until the next morning when I was allowed to sit up in a chair. That was the first time I felt the burning pain in my vaginal and rectal areas. As I just had major surgery in the pelvis I didn't think anything of it. I was discharged that day with normal instructions (rest, don't lift anything, etc.). That weekend my mother came over with food for us, and I told her I couldn't sit because of the pain. She mentioned that she never had that type of pain with any of her abdominal surgeries. Time went on...
Beginning of December I had a 4-week checkup with my doctor and mentioned this pain I had. She thought because I am so petite without much fat in the pelvis I must need extra healing time (I'm 5'3" 115lbs - really?). Next appointment was two weeks later; she had me do bloodwork and another ultrasound. Good news was anemia was disappearing. Bad news she couldn't find anything wrong. Told me to rest more. At this point it had been about 7 weeks and I couldn't sit, drive, or walk around much at all. I also couldn't wear any pants that were anything other than loose leggings or pajama pants or the pain got excruciating. I have terrible episodes of night sweating and my heart pounding. I've always been freezing cold so this is bizarre for me.
At the beginning of January my doctor referred me to a cranial-sacral PT and ordered a CT scan. She thought it might be my tailbone from having my legs in stirrups during the surgery for a time. I did about 3 weeks of PT and the CT showed nothing abnormal. I was in such pain I was in tears and could not stand it, so I demanded to see another doctor in the practice because mine was on vacation. I started seeing him then and haven't seen the one that did the surgery since. He diagnosed me with myofascial pain syndrome, had me wait to see if it got better on my own, and had me start going to a pelvic PT starting in March (the only one within an hour of my home). Also tried Neurontin which did nothing but make me feel like I'm in the twilight zone. I had a lidocaine injection 4/10/18 under anesthesia (this doc said I had the worst case of myofascial pelvic pain syndrome he's ever seen and he didn't want me to fly off the table). When I woke up, part of the outer part of my vagina was numb but all the pain remained with no relief. It got worse over the next two weeks before settling down to normal. At my follow up appointment he referred me to Dr. Rardin in Providence RI (urogynocologyst/pelvic reconstruction surgeon) because this is Dr. Rardin's specialty and maybe he did it wrong. Had my consultation/exam with Dr. Rardin 4/28/18; he agreed with the diagnosis but thought I needed an injection to the levator ani as he thought I had a pudendal nerve block. We scheduled an injection for 6/7/18 (tomorrow) which was the soonest available. When I talked to my doctor about my visit with Dr. Rardin, he said the levator ani is where he did the injection, but I still need to move forward with this. This is when I realized my doctor has no clue what to do with me and started researching pelvic nerve problems. Additionally, the pelvic PT was making the pain exponentially worse as all he cared about was making me do strength training.
FROM THE VERY START A GYNOCOLOGIST FRIEND OF MINE SUGGESTED THEY SUTURED A NERVE - I SHOULD HAVE EXPLORED THAT IMMEDIATELY. In finding out about pudendal nerve entrapment via google, I found Dr. Conway's number and had a phone consultation with him 5/11/18. His words were "It definitely sounds like pudendal nerve damage." He had me stop pelvic PT immediately as he said if it's the nerve strengthening exercises cause further damage. After a 3 week delay because his office got a new computer system, I finally got an appointment to see him in person 7/9. I am in Connecticut about 2 hours away from him, so that's not too bad.
While I have that tiny dim light at the end of this nightmare tunnel, I am losing my mind about this situation. I have spent all of our savings, have run out of disability, and am working part time from home (I am a senior analyst in banking). We are broke and barely making it as I am the primary breadwinner. Hubby is working as much OT as he can but it is nowhere near what I normally make. We've got 4 kids (3 younger) and the whole household has had enough. Even my patient, kind husband is at the end of his rope and exhausted. My life is just a nightmare because I can't do anything or go anywhere. I am afraid if I can't get back to normal soon I will lose my job. It is just Hell.
If you read this far you are an angel. Thanks for taking the time. I just don't know where else to turn where people truly understand. Keep your fingers crossed for me tomorrow - I am still doing the injection in the crazy hope that it works.
Katherine
Awaiting official diagnosis
Re: Awaiting official diagnosis
Katherine
I live near by in Mass. You need to find someone to help with pain management until you sort this out. I could not tolerate Gabaoentin at all. I did better with Nortriptyline, Lyrica and Cymbalta. Also ask one of the Gynecologist for Valium lidocaine baclofen suppositories. The pain from the pudendal nerve can be devastating crippling. If you want the names of some of the provides I have seen in the Boston area let me know. Oh your are in good hands with Dr Conway.
I live near by in Mass. You need to find someone to help with pain management until you sort this out. I could not tolerate Gabaoentin at all. I did better with Nortriptyline, Lyrica and Cymbalta. Also ask one of the Gynecologist for Valium lidocaine baclofen suppositories. The pain from the pudendal nerve can be devastating crippling. If you want the names of some of the provides I have seen in the Boston area let me know. Oh your are in good hands with Dr Conway.
Re: Awaiting official diagnosis
I agree with Patty. You definitely need some better pain control until you can get this sorted out. I would not hesitate to ask for opioids, especially something like buprenorphine that is a partial agonist and might not cause you to develop a tolerance as much as some of the other opioids. But I would only see this as a temporary solution. If the other drugs work, that would be great but when I was in my worst pain those other types of drugs just didn't cut it. Opioids were the only thing that took the edge off the pain.
Also, if you could see a PT who knows how to treat pudendal neuralgia, at least for an evaluation, that would probably be helpful. They can do a pelvic exam and tell whether your pain is primarily along the course of the pudendal nerve. You can check out this list: http://www.pudendalhope.info/node/63
Anyone who has you do strengthening exercises doesn't know what they are doing.
If the first injection of lidocaine into the levator ani did not relieve your pain, that means there is something else going on in addition to the levator ani being in spasm -- or else they didn't get it into that muscle. For me, pudendal nerve entrapment is what caused the levator ani to be in spasm (and the obturator internus). So, it sounds like you still need a proper diagnosis. A good PT, and of course Dr. Conway who is great, will be able to help with that. But July 9 is forever away when you are in this type of pain. So your doctors owe it to you to help you with some real pain relief. If they won't, you can try ice and heat -- whichever helps -- if you haven't already.
Have you had an MRI yet? If you can get the 3T from Dr. Hollis Potter that would be great but you might be able to get it locally if there are other doctors in your area familiar with her protocol. I would request MRI's instead of going for CT scans if possible because with CT's you get too much radiation.
You are going to get through this but it takes time to get it all sorted out. We are here to give encouragement if we can. You might want to ask your hubby to read the thread at the following link: http://www.pudendalhope.info/forum/view ... =25&t=4874
Take care,
Violet
Also, if you could see a PT who knows how to treat pudendal neuralgia, at least for an evaluation, that would probably be helpful. They can do a pelvic exam and tell whether your pain is primarily along the course of the pudendal nerve. You can check out this list: http://www.pudendalhope.info/node/63
Anyone who has you do strengthening exercises doesn't know what they are doing.
If the first injection of lidocaine into the levator ani did not relieve your pain, that means there is something else going on in addition to the levator ani being in spasm -- or else they didn't get it into that muscle. For me, pudendal nerve entrapment is what caused the levator ani to be in spasm (and the obturator internus). So, it sounds like you still need a proper diagnosis. A good PT, and of course Dr. Conway who is great, will be able to help with that. But July 9 is forever away when you are in this type of pain. So your doctors owe it to you to help you with some real pain relief. If they won't, you can try ice and heat -- whichever helps -- if you haven't already.
Have you had an MRI yet? If you can get the 3T from Dr. Hollis Potter that would be great but you might be able to get it locally if there are other doctors in your area familiar with her protocol. I would request MRI's instead of going for CT scans if possible because with CT's you get too much radiation.
You are going to get through this but it takes time to get it all sorted out. We are here to give encouragement if we can. You might want to ask your hubby to read the thread at the following link: http://www.pudendalhope.info/forum/view ... =25&t=4874
Take care,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Awaiting official diagnosis
Thank you Patty and Violet for the responses.
I am almost 24 hours out from the injection yesterday. What an awful experience. It was a realm of pain I did not enjoy being awake for. Dr. Rardin said that if it hurt the way it did then he was in the right spot. After the injection I was light headed and dizzy for quite a while, so they had to give me a wheelchair to get to the car. Ugh. It is over an hour away from home, which was awful considering the dizziness and "weird" feeling I had.
Today I feel different, but not without pain. It's hard to explain but every time I stand or walk I get this feeling like my whole pelvic floor is giving out or dropping inside, in addition to a deep pain I've experienced before in labor. The good news is that there is some numbness still and I am able to sit longer. I've already worked over 2 hours today and will probably do 2-3 more later. All in all, it is too soon to know if it's helped.
To answer/respond to some of your suggestions-
The pelvic PT I went to is the only one that is under an hour from me. I can't drive more than 15-20 minutes on my own, and my husband can't keep taking time off to bring me. All the others in CT, MA, or RI are 1.5-2+ hours away which is not feasible at this time. We live in rural CT with very limited options. My town doesn't even have any traffic lights! Just farms and woodland. We drive at least 10-15 minutes for everything. I have done some self massage and relaxation exercises I found on YouTube which help only once in a while. I think my body is so worked up its in its own vicious cycle.
In terms of opioids, I am unable to tolerate them. I have all the severe side effects and limited relief. Whenever I have any surgery ibuprofen and Tylenol are pretty much it. I've been taking flexeril most nights to help me relax and get to sleep, but it doesn't do much for the pain. Ice makes my spasms worse, and the heating pad just makes me warm and toasty (no relief). I appreciate the suggestions though - I will try anything at this point.
Forgive me, but where is Dr. Potter located? I really doubt anyone in my area has this kind of thing since I have to travel so far just for trigger point injections. I've not had an MRI.
As for my hubby - he is amazing and does understand. He's just exhausted. He's been doing all the grocery shopping, cleaning, chauffeuring children, etc. mostly on his own for 7 months. It's like being a single parent. He did take these two days off from work to bring me yesterday and be around if I need him today. I convinced him to go to the rink for men's stick time and blow off steam, so that's where he is now (hockey is life in our house). My parents are around but my mom had breast cancer this spring and went through her own procedures, surgery, and recovery (they were able to remove it all via lumpectomy and is now gone).
Again, thanks so much for your words of encouragement and suggestions. I appreciate it and love that I can come here where people really understand the difficulties of the situation.
I am almost 24 hours out from the injection yesterday. What an awful experience. It was a realm of pain I did not enjoy being awake for. Dr. Rardin said that if it hurt the way it did then he was in the right spot. After the injection I was light headed and dizzy for quite a while, so they had to give me a wheelchair to get to the car. Ugh. It is over an hour away from home, which was awful considering the dizziness and "weird" feeling I had.
Today I feel different, but not without pain. It's hard to explain but every time I stand or walk I get this feeling like my whole pelvic floor is giving out or dropping inside, in addition to a deep pain I've experienced before in labor. The good news is that there is some numbness still and I am able to sit longer. I've already worked over 2 hours today and will probably do 2-3 more later. All in all, it is too soon to know if it's helped.
To answer/respond to some of your suggestions-
The pelvic PT I went to is the only one that is under an hour from me. I can't drive more than 15-20 minutes on my own, and my husband can't keep taking time off to bring me. All the others in CT, MA, or RI are 1.5-2+ hours away which is not feasible at this time. We live in rural CT with very limited options. My town doesn't even have any traffic lights! Just farms and woodland. We drive at least 10-15 minutes for everything. I have done some self massage and relaxation exercises I found on YouTube which help only once in a while. I think my body is so worked up its in its own vicious cycle.
In terms of opioids, I am unable to tolerate them. I have all the severe side effects and limited relief. Whenever I have any surgery ibuprofen and Tylenol are pretty much it. I've been taking flexeril most nights to help me relax and get to sleep, but it doesn't do much for the pain. Ice makes my spasms worse, and the heating pad just makes me warm and toasty (no relief). I appreciate the suggestions though - I will try anything at this point.
Forgive me, but where is Dr. Potter located? I really doubt anyone in my area has this kind of thing since I have to travel so far just for trigger point injections. I've not had an MRI.
As for my hubby - he is amazing and does understand. He's just exhausted. He's been doing all the grocery shopping, cleaning, chauffeuring children, etc. mostly on his own for 7 months. It's like being a single parent. He did take these two days off from work to bring me yesterday and be around if I need him today. I convinced him to go to the rink for men's stick time and blow off steam, so that's where he is now (hockey is life in our house). My parents are around but my mom had breast cancer this spring and went through her own procedures, surgery, and recovery (they were able to remove it all via lumpectomy and is now gone).
Again, thanks so much for your words of encouragement and suggestions. I appreciate it and love that I can come here where people really understand the difficulties of the situation.
Re: Awaiting official diagnosis
Hi Katherine,
I'm not sure exactly what procedure you had done -- was it a pudendal nerve block or a trigger point injection into the levator ani muscle? How are you feeling now?
It sounds like you live in a beautiful area. I guess being in a rural area does make it difficult for getting medical care. I hope you will be able to find some treatments that help you.
Violet
I'm not sure exactly what procedure you had done -- was it a pudendal nerve block or a trigger point injection into the levator ani muscle? How are you feeling now?
It sounds like you live in a beautiful area. I guess being in a rural area does make it difficult for getting medical care. I hope you will be able to find some treatments that help you.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Still fullofhope
- Posts: 11
- Joined: Sat Jun 09, 2018 1:47 pm
Re: Awaiting official diagnosis
Hi Katherine
How are you now? I am a new member and I have exactly the same problem as you have as a result of a hysterectomy. Went to see the surgeon many times for the unspecified pain and finally another genacologust who has had training on pudendal nerves did Qtip test on me and concluded that I have nerve inflammation. Was given lidocaine gel and Naproxen but did not help. Was told to get a nerve block at a pain center in another hospital. Should I also get a MRN from Dr Potter?
Yvonne
How are you now? I am a new member and I have exactly the same problem as you have as a result of a hysterectomy. Went to see the surgeon many times for the unspecified pain and finally another genacologust who has had training on pudendal nerves did Qtip test on me and concluded that I have nerve inflammation. Was given lidocaine gel and Naproxen but did not help. Was told to get a nerve block at a pain center in another hospital. Should I also get a MRN from Dr Potter?
Yvonne
Re: Awaiting official diagnosis
Hi Ladies-
I had a trigger point injection to the levator ani. The pelvic doctor in Providence thought I had a pudendal nerve block the first time with my regular doctor, but it was a trigger point injection as well. There was just some confusion because he didn't have a chance to review my medical records before my appointment.
The pain spiked for about 3 days and then settled back down to the "normal" level on Monday. It is much worse today but I've been working more which makes everything worse. I am afraid I am doing further damage by forcing myself to push through it but financially I don't have a choice. It's making me nauseated and makes my vision blurry on bad days, and all I can do tonight is lie in bed alone while my family is up doing fun things.
Yvonne - tell me about your hysterectomy/pain experience...did your symptoms come on immediately after surgery? It is just a nightmare going through this after being told I'd be back to work in 4-6 weeks. I tried lidocaine gel when they did the injection last week and it didn't take the pain away, but that's probably because the nerve was so agitated. I really want to get a nerve block as a diagnostic tool but I am leaning toward waiting until my appointment with Dr. Conway so he can see me in my current state. July 9 seems so far away! Where do you live? Are you able to travel to one of the "experts" listed on the doctor page? I am blessed to be only about 2 hours from Dr. Conway.
Katherine
I had a trigger point injection to the levator ani. The pelvic doctor in Providence thought I had a pudendal nerve block the first time with my regular doctor, but it was a trigger point injection as well. There was just some confusion because he didn't have a chance to review my medical records before my appointment.
The pain spiked for about 3 days and then settled back down to the "normal" level on Monday. It is much worse today but I've been working more which makes everything worse. I am afraid I am doing further damage by forcing myself to push through it but financially I don't have a choice. It's making me nauseated and makes my vision blurry on bad days, and all I can do tonight is lie in bed alone while my family is up doing fun things.
Yvonne - tell me about your hysterectomy/pain experience...did your symptoms come on immediately after surgery? It is just a nightmare going through this after being told I'd be back to work in 4-6 weeks. I tried lidocaine gel when they did the injection last week and it didn't take the pain away, but that's probably because the nerve was so agitated. I really want to get a nerve block as a diagnostic tool but I am leaning toward waiting until my appointment with Dr. Conway so he can see me in my current state. July 9 seems so far away! Where do you live? Are you able to travel to one of the "experts" listed on the doctor page? I am blessed to be only about 2 hours from Dr. Conway.
Katherine
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Still fullofhope
- Posts: 11
- Joined: Sat Jun 09, 2018 1:47 pm
Re: Awaiting official diagnosis
Hi Katherine,
Hope you feel better now from the injection and pain has lessened for you. I live in Quebec, Canada, not far from the border. I really wished that my hysterectomy were just a nightmare but have to face the reality. Never thought this could happen to anyone. I also did quite a lot of research online and felt discouraged about ever getting better, but I am still full of hope. I was also thinking of going to see Dr Conway but am very hesitant about five-hour long drive. My dear husband has been doing everything at home and I feel bad about it. Please keep us posted about your upcoming consultation with Dr. Conway. All the best to you!
Yvonne
Hope you feel better now from the injection and pain has lessened for you. I live in Quebec, Canada, not far from the border. I really wished that my hysterectomy were just a nightmare but have to face the reality. Never thought this could happen to anyone. I also did quite a lot of research online and felt discouraged about ever getting better, but I am still full of hope. I was also thinking of going to see Dr Conway but am very hesitant about five-hour long drive. My dear husband has been doing everything at home and I feel bad about it. Please keep us posted about your upcoming consultation with Dr. Conway. All the best to you!
Yvonne
Re: Awaiting official diagnosis
Hi Yvonne-
I encourage you to call Dr. Conway's office despite the 5 hour drive. You can be scheduled for a free phone consultation with him so he can determine if your symptoms sound like PN damage. I had my call with him in May and we talked for 10-15 minutes before he determined this is the likely cause of my pain. He was very kind and thorough even in that short call. The sooner you call the better as even his phone consultations are booked out a month or two.
I talked to the doctor in Providence today and he is going to order the MRI for me once Dr. Conway's office tells him which one he needs. Hopefully I will have it before my appointment July 9.
I'll keep you all posted.
Katherine
I encourage you to call Dr. Conway's office despite the 5 hour drive. You can be scheduled for a free phone consultation with him so he can determine if your symptoms sound like PN damage. I had my call with him in May and we talked for 10-15 minutes before he determined this is the likely cause of my pain. He was very kind and thorough even in that short call. The sooner you call the better as even his phone consultations are booked out a month or two.
I talked to the doctor in Providence today and he is going to order the MRI for me once Dr. Conway's office tells him which one he needs. Hopefully I will have it before my appointment July 9.
I'll keep you all posted.
Katherine
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Still fullofhope
- Posts: 11
- Joined: Sat Jun 09, 2018 1:47 pm
Re: Awaiting official diagnosis
Hi Katherine,
How are you? Thinking of you. I will have a phone consult with Dr Conway on July 19th. Hopefully things will clarify and I will take the five- hour trip to see him. Thanks for your advice, and wish you feel better after the injection.
Yan
How are you? Thinking of you. I will have a phone consult with Dr Conway on July 19th. Hopefully things will clarify and I will take the five- hour trip to see him. Thanks for your advice, and wish you feel better after the injection.
Yan