Awaiting official diagnosis
Posted: Wed Jun 06, 2018 6:50 pm
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
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
