Strong possibility of pn issues, love some feedback

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Post Reply
2010dlk
Posts: 1
Joined: Thu Feb 14, 2013 2:55 pm

Strong possibility of pn issues, love some feedback

Post by 2010dlk »

Hi my name is Donna, I have had some ongoing issues since August that I feel may be pn. I will describe my symptoms as accurately as possible. Although it will be difficult to be brief, so I appreciate your patience. I also want to say that I am very happy to have found this website and thank you in advance for reading my posts and for any feedback you may have :)
I am a very active 44 y.o. female with a great love of the outdoors, I have been an avid atv rider and snowmobiler for many years and absolutely love these as my favorite hobbies. This past summer I had this not so brilliant idea to buy a dirt bike after watching my son on his and have always wanted to drive a motorcycle. So, my husband and I searched and bought me a nice little bike perfect for my size a Yamaha 125. So I began to practice riding on my son's track and eventually felt confident enough to go trail riding. After a long ride, I would feel like I had pulled muscles in my buttocks and a bit of lower back pain, which would always resolve itself in a few days. I believe this came from the kind of seat on the bike, it was not comfortable at all. But I did love riding and being out and about. My medical problems began to surface in August. Out of the blue one day I started to experience vaginal/groin pain and low back pain, not really knowing what this might be, I just tried to rest at night and continued about my usual activities working, helping take care of my elderly mom. On August 12th. we all had planned to go for a ride to celebrate my birthday. Because I already had the above mentioned pain, I was going back and forth with whether i should ride my dirt bike (my original plan), or ride the atv. My son was also going with his bike and I really wanted to show him how much my riding skills had improved, and so that is what I did. I took my bike. At the end of the day as usual I had buttocks pain from the seat and over the next couple days did have the pain i mentioned (feeling of pulled muscles). After a few days that pain went away like it always did but my groin, low back pain remained. About a week later I started to have very bad discomfort in my buttocks. This was a symptom I had never experienced because it was not immediately after a ride per say. As the next few days came about the pain definetly grew in intensity, at this point I was in a lot of lower back pain (coccyx area), buttocks and groin. I also began to have some discomfort in my left foot. Off to the doctors I went he ran many tests including bloodwork and a physical examination. My white blood count was very high and he treated me for a urinary tract infection. When I went back a few weeks later my white blood count was lowering, but I still had the above pain which just would not relent. At this time, It seemed sitting was more uncomfortable than other positions, I had been taking time off of work at this point, (i am a self-employed house cleaner) and my best work was about an hour drive, so I was mostly lying on the couch and getting up to stretch and prepare meals. My doctor eventually sent me for a mri of my back after my left leg actually gave out and I fell to the floor, which showed some bulging discs and narrowing end plates and he set up a consult with a neurosurgeon who came to the area monthly. He saw me for about 10 minutes, looked at my mri told me there was nothing seriously wrong and collected his 200.00 fee and sent me on my way. Also I was seeing a chiropractor and had 12 adjustments with no relief. The pain persisted and I also began to notice i was bloated more than usual and experiencing some pelvic pain, I was sent for a pelvic catscan. They discovered a large ovarian cyst on my left ovary. Now I had a hysterectomy about 10 years ago and the left ovary and fallopian tube was the only thing left in tact. I met with a very nice ob/gyn who recommended that I have laparascoptic surgery to remove the cyst. It would be a very quick procedure and very minimal recovery time. This was in December so about 4 months after this all began. Surgery was scheduled for Dec. 26th. It made sense to me that perhaps the groin pain could be caused by the cyst and I thought perhaps my muscles and/or nerves were working incorrectly and could possibly be causing my other symptoms of back/buttocks pain. I woke up after surgery to find out that when they put the camera in, they could not get to my ovarian cyst because of massive adhesions and scar tissue. The decision was made to call in another surgeon to assist my ob/gyn. They made a cut at my c-section/hysterectomy scar and continued on with an open incision surgery. They told me that they removed a bunch of adhesions, removed the cyst as well as my fallapion tube and 1/2 of my ovary. So I spent the night at the hospital went home the next day with narcotic pain medications to recover. I saw my ob/gyn a week later and we thought my recovery was going well. Because i now had this new pain from the incision, my pain was mostly there and I didn't seem to have as much pain in the usual areas I had been having, but I did still have pain even with the pain medication. On the third week of recovery, I felt good enough to try and go back to work. At week 4 of post op recovery I began to once again experience major pain in my buttocks, low back and off/on groin pain. I was devastated. At this time I no longer was taking the pain medication and was being weened off diazepam which i had been taking since august for a strong muscle relaxer. Come week 5 I was out of my mind in excrutiating pain, it seemed much worse than before. A real eye opener because I didn't think the pain could get any worse before the surgery to yes it is much worse. I was feeling like oh my god what am I going to do. My job was suffering, my husband and family also was suffering right along with me, but mostly I began to feel very defeated and scratching my head for answers??? Then, I was at week 6 of post-op and all of a sudden I could not have a bowel movement and I was so uncomfortable. After 5 days of not going, I went to the emergency room, I thought maybe I had an obstruction. I was also very very nauseaus. They did blood work, did another catscan with contrast to check for obstruction in my intensines and found none. They gave me some very strong pain medication through my i.v. and nauseau medication that day, which I can honestly say it gave me very minimal relief from this pain. They told me to get some laxatives and that should do the job. That was on a monday, on Tuesday my mother in law sent over a bottle of mirolax I took 5 doses of that and drank a total of a dozen glasses of water and went to bed that night so miserably uncomfortable. I was also experiencing pain in my mid back and under my shoulder blades, pain I still have. Finally the next day (Wed.) about 5 a.m. the gas cramping started and very painful to release the gas but I was eventually able to have about 5 bowels movements (loose stools) and as the day progressed my nauseau seemed to be getting better and I thought wow, well that did the trick. It did for a day or two then I was again not able to go on my own. This has been going on now for about 3 weeks. I have become very concerned about my pain levels and now not being able to have bm's on my own. Last Monday I called my ob/gyn which the e.r said i should do and was told by the receptionist that this is a problem more for the other surgeon and not the ob/gyn. I called them yesterday and the dr. I had is on vacation and has another doctor on call. I explained everything to the receptionist and she said she would look at the e.r. reports and call the dr. to see what he wants to do. Called me back and told me he said to keep taking laxatives and wait for the dr. to get back. As you can imagine I was very upset, I felt like I was being blown off and felt that this is now a serious problem and needs to be taken as such. I expressed that to the receptionist who called the dr. back and he called me personally. I told him I needed to be seen, I am very concerned about my pain and constipation and am suffering a great deal he reluctantly changed his mind and had me come in for appt. at 2:00. He told me on the phone that my cat scan the week before also showed a 6 cm. ovarian cyst and I told him, that can't be they took out the 5.6 cm. in December. I then called the ob/gyn and was very upset and wanted some answers to why i still had this cyst that they told me was removed. The Dr. got on the phone and reassured me that they did indeed remove the cyst and that this must be a new cyst. WOW, can it get any worse. He is a very kind dr. and wants to see me today at 3:30 to discuss this reoccuring cyst issue. Let me rewind to last night as I lay here in complete agony I get online to start trying to find answers again and I end up at the pudendal nerve pages. Wow again I am back hearing the words pudendal nerve which i actually saw online back in August when my symptoms first began. At that time I had many of the symptoms of pn pain and told my husband about it. A week after that on one of my visits to the e.r. my husband and I were arguing because I was so frustrated with not getting any answers and crying, I was so upset and he was pointing out that I was a terrible patient on the computer all the time, trying to self-diagnose my problems and he was upset about this. So it was at that time that I thought maybe he is right and I don't know what is wrong with me and kind of put my suspicion of pn issues in the back of my mind. But, last night when I again was led to pn information, i feel i cannot ignore this possibility anymore because I now have all the symptoms of pn. I am wondering if my original problems that started in august may have been pudendal nerve encroachment from riding the dirt bike and is now worse perhaps pudendal nerve being trapped because of the trauma of pelvic surgery irritating an already existing problem. The surgeon yesterday told me that he wants to do a colonoscopy to rule out any blockages ,colon cancer and things of that nature. My concern is that he might inadvertanly cause more problems if I do have a nerve issue such as pn. I am very much in fear right now as things have gotton to a very serious point. When I go to my ob/gyn later today i am going to bring with me my research on pn and share my concerns and see if he has any ideas. I do not know if he has any experience with pn problems. I live in maine, which is very rural and I don't know where to go from here and what kind of dr. I should see. The costs of specialist is an issue as my finances are poor. So, this is where I am at and asking for anybody reading this post to please please give me your feedback on my story. I know it has become a lengthy story but I feel I needed to tell all to you to receive proper feedback. Thank you so much for reading my story, I am very scared and i am desperately seeking answers.
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Strong possibility of pn issues, love some feedback

Post by helenlegs 11 »

It is a very good idea to take symptoms of PN into your doctor. You will be able to fi'nd how open he or she is to a PN problem I may have missed something in your post, you do describe the level of pain but I wasn't 100% sure if you had mentioned the type of pain that is typical of nerve pain. Take a look at the symptoms on the home pages. . . . I know you said that your symptoms match but not exactly what they were?? Unless I missed that, if so, sorry.
I don't think that having the procedure offered by the Dr would be a bad thing and it will help rule out other problems. Of course the cyst needs investigation too.
I think you need to get other problems investigated before homing completely in on a pn diagnosis perhaps but it will do no harm to at least mention it to your doctor so that he/she at least has that information.
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Strong possibility of pn issues, love some feedback

Post by HerMajesty »

Hi,
I am sorry to hear that you seem to have a complicated issue with possibly several contributing factors.
What I keep coming back to is that the onset, with the dirt biking, etc., sounds like a joint injury. I know you had some inkling of this because you went for Chiropractic adjustments which didn't help...but practitioners that can correct complex pelvic joint dysfunction are few and far between. Just want to give you a heads - up as to who may well be the closest practitioner to Maine, who would be able to effectively correct any joint dysfunction in the pelvic region: Orthopaedic and Sports Medicine Specialists, Inc. in North Andover, Mass. http://osmspt.com/ I have no affiliation with them / ulterior motive. I had a pelvic joint injury that contributed quite a bit to my problem, it was corrected by a PT here in Nevada, and after that I worked with him for awhile and became aware of OSMS through networking. They are not "women's health PT's", would not be listed on this site, and would probably just refer you to a pelvic floor PT if you told them you wanted to be seen for pudendal neuralgia. But if you say that you want to be checked for sacroiliac joint dysfunction or related injuries to the back, pelvis, and hips, they might be able to help you quite a bit.
Of cuorse there are many other possible issues due to the extent of internal scarring, ongoing ovarian cysts, etc...but it might be a good idea to start out by concentrating on the precipitating event. If your husband can drive the distance while you lie in the back seat, it has potential to be a relatively inexpensive road trip, and is less involved than a lot of other ways you could start to investigate this. Also if you haven't already found him, your closest pudendal Physician would most likely be Dr. Conway in New Hampshire - he is in the Physician listings on this site and does decompression surgeries, if your pudendal nerve is in fact entrapped in scar tissue from past surgeries.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
User avatar
Violet M
Posts: 6713
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Strong possibility of pn issues, love some feedback

Post by Violet M »

Donna, you may also want to have an evaluation by a pelvic floor physical therapist who can asses the state of your pelvic floor muscles. If your muscles tensed up from the dirt bike seat there could be muscle tension impingement on the pudendal nerve or nearby related nerves causing a cascading effect on the whole pelvic region. I don't know where you live in Maine but you could check out this list to see if there are any good pelvic floor PT's near you. http://www.pudendalhope.info/node/63#ME

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.
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Strong possibility of pn issues, love some feedback

Post by calluna »

Hi Donna - I'm sure you've already read all the stuff on the homepage, lots of useful info there.

But I just wanted to say a bit about dealing with constipation. This may cause a lot of discomfort in itself, and once that's managed, then that's one less issue complicating the picture.

I've had a lot of problems with this particular issue (and still do, although I know how to manage it now) and I've found the nurse practitioner at my GP surgery to be much more helpful and supportive regarding constipation than any doctor. Yes, the doctors need to sort out why it is happening in the first place - but the nurse has been the one with the helpful advice regarding what to take, and how much, and how often, in order for things to function. So please do talk to the nurse at your doctor's office. I'm sure she'll be able to give you some constructive help and advice.

(By the way I am not surprised that you felt so bad after taking 5 doses of Miralax and drinking 12 glasses of water. That would not be recommended!)
molly
Posts: 121
Joined: Wed Aug 29, 2012 7:58 pm

Re: Strong possibility of pn issues, love some feedback

Post by molly »

Hi Donna,

If it were me Iwould definitely not have a colonoscopy.
When my pn was triggered by an uninformed gynaecologist Iwas subject to both minor and major unnecessary surgery. Like you it made it worse. I think Prof Robert the international pn specialist has written that surgery can make it worse, this is evidence based.

After my pn went rampent post surgery Iwas offered investigations both bladder and bowel, but did not believe in coincidences, that several systems could suddenly go wrong. I have subsequently refused screening colonoscopies, even though my brother died aged 55 from bowel cancer.
A colonoscopy is a very invasive procedure, and if you already have bowel pain I think it could make it worse, this is only my opinion.

If your docter wants to exlude bowel pathology, you could ask for a straight forward CT scan, or a CTcolonogram, no where near as traumatic to the tissues as a colonoscopy.

Regards Molly
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Strong possibility of pn issues, love some feedback

Post by calluna »

Re colonoscopy, I've had one with no problems at all. I was rather worried beforehand, but I need not have been. YMMV of course....
Post Reply

Return to “WELCOME CENTER”