am a 68 year old, once very active female who started having anal, rectal, vaginal, clitoris pain in April of 2021. Since that time I have had 15 months of pelvic floor therapy, a colonoscopy, Defecogram X-Ray and MRI, Pelvic ultrasound, several trigger point injections, several prescription meds, several different types of suppositories, creams, E Stem, TENS, 4 different nerve blocks, etc. I have seen 17 different types of doctors. I have been told that I have Hypertonic Pelvic Floor Dysfunction. Nothing has helped and the pain has gotten debilitating. Does anyone know of or had any treatment that has worked. I am at the end of my rope and feel like I am losing my mind. PLEASE SHARE!!!
Above posted 4 months ago. I have had several more different types of blocks, more drugs, more physical therapy , botox, still no changes. I had a CT guided nerve diagnoses last week which determined that I do NOT have Pudendal Neuralgia. I don't know what to do, where to go. 19 doctors haven't helped. Not sure I can make it to 69 years old. How do people find doctors who help? I'm in Alabama and have been to a recommended Pelvic Clinic in Nashville , TN but it didn't help. Ideas?
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Hi,I am so sorry you are experiencing all that. I too have similar circumstances and have been seeing drs for 15 months and going in circles. I am a 69 year old so very similar in age.
I was diagnosed with pudendal neuralgia and have had 2 nerve blocks.and also a highly de-conditioned pelvic floor. Apparently it can take physio a long while to work to.
I also have intussusception, a rectocele and enterocele which was diagnosed when having a proctogram. Every time I have a large bowel motion I get excruciating pain in my pelvis and rectum. I have been told my nerves are jangled.
I also have chronic IBS. I have just started with a hospital pain clinic where I am hoping they can help. Have started on a very low dose of Pregablin. I go to a specialist physio and now with all the new ideas about pain I am seeing a psychologist who will help with stress, etc. This type of pain would give anyone stress so I understand where you are coming from. It is so debilitating.
Some days I want to give up but you have to keep hoping that eventually you will find someone who can help.
A supplement called PEA (Palmitoylethanolamide) can.help with pain but takes awhile to work.
You have to keep searching and trying. Don't give up hope.
I think it is just going to take a long while for all the nerves to settle down. It has also been suggested I get a ganglion implar injection - not sure about that yet.
Are you sure you don't have pudendal neuralgia? I am lucky to have a top specialist who knows all about it because many don't.
Hi, My specialist is Professor Thierry Vancaillie from WHRIA. Women's Health & Research Institute of Australia. He is a leader in the field of pudendal neuralgia and is a pain mgmt specialist.
He has rooms in the city of Sydney. Their organisation looks after women with various health issues. They have a team working with them, eg oestopath, psychologist and physio. Look them up on the internet if interested.
Thank you for getting back to me. I have the same specialist. I have had two nurve block and botox . The first one. Did not help. I then had lazer and it helped with the sensitivity and pain.
I then went back to my specialist and he repeated the nurve block and botox. This time it did help. I was good for three years. Since Xmas I developed muscle pain and was told that I had significant narrowing of my volva. I am hopping that the botox can help. Then I need to find a pelvic floor pbysio close to home.
Could you tell me what pain clinic you are going to. Also do you know of a good pelvic physio near liverpool.
Thanks for your message. What was the laser treatment you had? Did Prof Vancaillie do it? I haven't heard of that treatment. Did Prof Vancaillie do the botox treatment too? Did you have any side effects from the Botox injections?
I am going to the Concord Hospital Pain Clinic.
Sorry, I don't know of a good physio in the Liverpool area. I go to one who specialises in pelvic problems in Concord.
I hope you continue to do okay. Take care and look after yourself.
Hi I had lazer at castle Hill under Doctor Chow. It did help but the side affect was it made me smaller inside. I was not told about this posibility. You just have to be careful what you have done. I had no problem with the botox under Doctor Vancaillie. He did not do my first one and I woke up in pain. Coming out of the anaesthetic I herd a nurse say that a doctor cut a perineum. I think Doctor vancaillie is the best and I will only have him , to do it.Thanks for the info.
Thanks for responding. I can only go by what the doctors doctors tell me. This last doctor is an Interventional Radiologist. He is the one who says says that I do not have Pudendal Neuralgia. He is doing some more studies to try to find the source of the problem. I have had 7 to 9 blocks, names I can't even remember. Injections, drugs changing all the time. PT for close to 2 years. MRI, CT, tests on my colon, rectum, anus... all normal. None of it makes any sense to me and I feel like doctors are just guessing. As you said, bowels movements are awful. I"ve actually lost 15 pounds. Who wants to eat? I'm just lost.
I'm so sorry I really don't have any advice for you but I couldn't read that and not say anything. I would say keep on at the doctors pain is not something you should just have to live with. It sounds so absolutely awful for you. Please make them aware of how much this is affecting your mental health and quality of life. The stress may be having a knock on effect in making the pain worse if you are tense. Look after yourself you are important.
For 7 years, I have been prescribed 40mg daily percocet. The take the edge off my pain. Fortunately I am not addicted, and take only as prescribed. Without them, my daily life is hell, thanks to the pain.
Sorry to read how much pain you’re in. I have endometriosis & adenomyosis not your condition but chronic daily pain too. I was just wondering if you’ve tried any alternative/complimentary therapies to help? Reflexology, Acupuncture, Energy healing? They may give some relief pain wise if not mentally they will help with stress.
Hi, what type of nerve blocks did you have?If it is not pudendal neuralgia, it could be a problem with one of the other nerves at the front of the pelvis: genitofemoral, iliohypogastric and ilioinguinal nerves.
I am waiting for nerve blocks to all 3 of those nerves. I have tried botox injections into the vaginal trigger points, but they cannot be done into the abdominal muscles (I also have rectus abdominis syndrome due to a pelvic surgery gone wrong). My pain management doctor once told me that if the nerve block is not done properly (by a very experienced doctor), the patient won't get any benefit from it.
I am so sorry to hear of your circumstances…I was misdiagnosed for almost 2 years..I ended up at a Pelvic Pain Dr named Richard Marvel in Annapolis Maryland …I was then properly diagnosed..I have pudendal neuralgia…I was told by numerous other dr.s that I did not have p/n…nerve blocks made me worse I too went a year with a physical therapy for women…I did learn that when one nerve is out of wack then the others will be set off by it…you may not have p/n but it may be a nerve issue..if you can find a pelvic pain specialist that is where I would suggest you start..i was not able to take the many different meds that were prescribed for me ..I am now seeing an herbalist I also read the book “Healing Pelvic Pain” by Amie Stien also do yoga daily you can get the dvd by Dustine Miller “ Your Pace Yoga Reliving Pelvic Pain…these are truly the only things that have helped me I spent almost 2/ years of my life in agony on my sofa ..I take herbs called valerian root and hops up to 3 times daily ..I have been doing this now for approximately 5 years…my herbalist has also taught me accu pressure…the medical dr.s made me worse again I am no dr. Just telling you what has worked for me ..I am active again..I can not sit longer then 2 hours at a time but there was a time I could not sit at all..I have learned what sets me off…stress is the worst… I found throughout my journey pelvic nerve pain reacts differently with each individual and it is definitely as with all chronic pain a mind set..just telling yourself that you will get well Is half the battle…start with the book ..I hope this helps good luck
Thanks, I am so glad to read your post about Dr. Marvel. He said my pelvic floor muscles are ok so my PT did work for the muscles. How long does nerve block last for pain? Did you have several injections? I agree with you about state of pain. This pelvic pain had been the worst pain ever experienced other than childbirth...
Good morning…PT helped me as well…I had only one injection..the numbing effect was worse then my pain so I never did another but they seem helpful for most..I found after seeing Dr. Marvel and being properly diagnosed that I was able to move on thru natural healing techniques such as yoga and herbalist…please read the book by Amy Stein “Healing Pelvic Pain” it helped me turn my life back in the right direction…I can tell you this from my own personal experience and speaking with many other women around the world that suffer with this horrid condition I will never be the same as I was however when I accepted this fact is when I started to heal there are things I will never be able to do again but it has opened up a new world of things I never knew I could do…for me personally and again this is just my personal experience..once I came to the mind set and accepted that this condition was not like a cold that I would get over and started doing the things I could do and was thankful to be off the sofa and living my new life I can honestly say that I am living my best life…again this is my personal journey…I hope you find the healing you need in Dr. Marvel again he is a very knowledgeable man and knows his business..but for me the more I tried the medical field the worse I felt ..please keep in touch with your personal road to your recovery God Bless
Hi, I wanted to ask you a specific question about valerian root and hops. How do you feel each of these have helped you ? I have hypertonic pelvic floor but many of bodies muscles are stiff almost all of the time. Do not sleep well, wake up in the night with further stiffness, better out of bed than in. Neurologist says head and shoulders is migraine, Rheumatology says its my Behcets and Ehlers Danlos, Gastroenterology says slow transit and not emptying bowel completely due to slow transit, and Gynaecology says Hypertonic Pelvic Floor causing pelvic muscle pain as well as vaginal pain which affects leg stiffness... Personally I think each area is related to one another and nobody can work together to figure it out... I hate taking medications they all suggest because they are all different and they cannot agree with one another. Recently started taking a low dose of magnesium and have had a little relief, however this like everything else is short lived...
Would love to hear how you feel these alternatives are helping you.
Hello…I was misdiagnosed for about 2 years and stoped seeing the medical dr.’s for the same reasons you list above all the meds they gave me made me worse..I started seeing an herbalist and after cleansing he put me on valerian root and hops it is a nerve tonic..this along with yoga (your pace yoga by Dustine Miller..reliving pelvic pain) and meditation I am able to live life with limitations I also read the book by Amy Stein healing pelvic pain..I sleep very well I take two capsules of valerian root and 2 hops at bed time I also use indica marijuana at bed time…my advise is fine an herbalist and try to get to a pelvic pain dr…not a pain dr a pelvic pain specialist to get the proper diagnosis..I hope this helps
Thank you for your reply and sharing your experience. It was a professor of Gynaecology who have diagnosed my hypertonic pelvic floor. Everything just spirals, I seem to just be pushed from one place to the next. I have had Behcets and Ehlers Danlos since my teens the rest has all happened during the last 15+ years. The Gynaecologist has referred me to a pelvic floor specialist team, still waiting for appointment. Apparently they are going to teach me how to relax my pelvic floor... however if the rest of my muscles are stiff I cannot see this working full time. Each time things relax, eg shoulders, biceps etc it really is within an hour or two things just go back to the same. I will try and find a herbalist but it is very limited where I live. May I ask what are the size capsules you take, just as a guide. I also read since finding your post that your body can get too used to taking valerian and you should not take every day, is your experience?
No I take it Daly some days 3 times a day others 2 times a day always at night…may I ask are you in England? I ask because I know a gal who has to go to France to get help they do not treat her in the
UK they have told her they do not have the right dr or treatment for her … I’d the pelvic floor specialist Texan physical therapy? It did help me i had pelvic floor muscle spasams but I had to go to a pelvic pain dr again not a pain dr for the correct diagnosis…I too was tossed from one dr to the next I even had herrina surgery that probably didn’t need to be done….unfortunately I was left out to dry…I had to take matters in my own hands and after a year or so with the herbalist and the yoga and meditation I am much better the book I mentioned helped a lot but I was compressed not entrapped so you truly need a proper diagnosis..again I hope this helps I get the valerian root from Amazon I use then now brand 500mg and the hops by Natures way 620 mg..I can take 2 of each up to 3 times a day..if it is going to help you will find you are not tired it eats my pain…I very rarely take it 3 times a day now…I hope this works for you
Thank you. I am in Scotland UK currently. I decided to pay for a pelvic floor mri which I get done shortly, after having every MRI you can think about. I had an inguinal hernia repair in Jan 2018, by 2019 I knew I had another the other side despite doubts from the doctors. By 2022 I was having yet another pelvic mri, not specifically for hernia, I asked could they look for it but they said no... but the radiographer on review confirmed my suspicions of another hernia, also have a hiatus hernia too. Referred to Surgical he wants another specific inguinal hernia mri but with me straining. Results further confirmed hernia but also noted a significant pelvic floor descent on straining, I was not advised how hard to strain so just pushed as hard as I could. My GP got involved when she saw the result then referred me to Gynaecologist and we are where we are, Gynaecologist was not happy with mri team giving me no information and not providing results for pelvic floor at rest and after straining. Non of them consider everything else that is going with my body despite asking over and over. I do believe if I can get proper sleep, relax my body muscles that my world would be a very different place. I will see if I can locate valerian and hops through Amazon and give it a try. Do you happen to know what type of valerian root is it in your tablets/capsules, I can see made from extract of valerian root as well as ground valerian root, and a tincture too. Thank you for your help and sharing your experience x
Hi! I’m EXACTLY like u and have done the exact same things!!!!!! All of it!!!!!! I did have a colostomy to help and I’m 200% worse!!!!!!! I agree with making it to 69!!!!!!! I’m in a VERY dark place right now!!!!!!! Please keep in touch! My email is mandykl1234@yahoo.com!!! Can’t wait to hear from u!!!! We r two peas in a pod!!!!!! Maybe we can help each other!!!!! I’m out of options!!!!!
I have tried DRG stimulator and spinal stimulator and now have a pain pump that doesn’t work! Have also tried Hypogastric nerve block and epidurals and ganglion blocks and acupuncture and hypnotherapy and I see therapists now and was doing physical therapy but internal therapy I can’t do. I saw the physical therapist at the wise-Anderson protocol but again can’t do internal! I had an MRN at UCSF and it showed nothing!!! We know it’s nerves but can’t figure out which ones! This started with ibs in 2012 and here I still am!!!!!! Pelvic floor dysfunction!!!! I need a break or I won’t be here anymore!!!! I don’t know what else to do! After my colostomy I started having the AWFUL urge to have a bowel movement which no one said could happen and now it’s the WORST it’s EVER been!!!!! I can’t move much less go out to live my life!!! I’ve NEVER been SO depressed in my life except when my mom passed!!! This is NO life!!!!!!! Hope to talk to u soon!!! Take care!!!!
Have you heard of Dr Shalini Shah at UCI? I don’t know much about her except for podcasts but she uses the Sprint PNS as one of her pain treatments. It’s a stimulator used for 60 days and then removed. Of course Irvine is probably not close by if you’ve gone to UCSF.
Hi! I have tried the Sprint stimulator twice with no relief!!!! I have tried EVERYTHING there is! I’m now going to try somatic therapy to see if that can help!! There is another new stimulator out that I’m going to try so we shall see!!! Thank u so very much for reaching out!!! It’s nice to talk to new people with new ideas!!! Take care and write whenever u want!!!!
I think it’s called saluda or soluda? I’m not sure! I will ask my pain doctor!!! I’ve been on opiates for so long my doctors say my nerve or pain receptors r shot!!! I’m using a pain pump now but that doesn’t help either!!! Unfortunately I’m very depressed and feel SO alone!!! I’m SO glad u reached out!!!! U made my day!!! Thank u!!! I’ll try researching the name of the new stimulator and let u know! Do u have pelvic floor dysfunction? I’d love to hear from u!!!!
Yes I do. For a long time. My pain is with sitting. Have you tried ketamine? I tried Spravato which is a form of nasal ketamine. After 3 sessions it didn't help and I didn't like the high, but it's really for depression. I want to find out more about ketamine infusions.
Hi sally! Is that your name? Lol. I have tried ketamine infusions and spravato also! I did two ketamine infusions but didn’t continue doing them! I was told I needed 5-6 infusions but didn’t see any difference after two so switched to spravato for two months which did nothing for my pain or depression!!! Nothing is helping and I’m SO feeling like nothing will!!! I did look up the new stimulator and it is saluda! I’m trying to be hopeful! What symptoms do u have and what have u tried? Where do u live? I live in Sacramento CA!!! My pain doctor just attended a pain conference this weekend and they were going to have a session on the pelvic floor so I’m hoping she will find some new answers!!!!! This is just the MOST debilitating pain I’ve EVER had in my life!!! How do u handle it? Like I said before I’m so glad u reached out and I hope we can keep talking and help each other! I’m always here since I can’t do anything!!! I’ll talk to u soon I hope!!!
I stay busy with activities that don't involve a lot of sitting. I go to regular PT for muscle building and have a good bunch of specialists but there are just too many unknowns with the pelvic region. I also refuse to talk about it a lot or think about it all the time.
Thank you for replying. I do go to Pelvic Floor Therapy every Tuesday and Thursday and have been for basically two years. I wish there were activities other than therapy, doctor appointments and procedures that I could go to and participate in. But with the pain I am experiencing, that is just not possible. I also don't talk about it except to the professionals I am working with. It is way too embarrassing to be trying to discuss with friends and neighbors. I know they don't want to hear about it and I don't really want to share. This site is really the only outlet I have to discuss these issues. I hate that anyone has gone through or is going through any of these pelvic related problems. However, it is a blessing that there are people that I can share with and learn from.
Hi! How do u stay busy when u r in pain? And how can u NOT think about it? My pain starts from the minute I get out of bed until I go to bed at night!! I HAVE to sit cuz standing puts SO much pressure on my pelvic floor! I feel like I’m being RIPPED in half with a volcano blowing up in my butt!!!! It’s been 10-12 years of HELL! I’m at my wits end right now and don’t know what to do anymore! I’ve tried EVERYTHING!!!!!! Well I won’t vent to u anymore! Lol. I hope things get better for u!!!! If u feel like talking I’m here and would love to know your story!!! Take care and have a nice day!!!
I can do many things comfortably except for sitting. I'm fortunate in that I don't wake up in pain. Evenings are the worst as that's when I sit the most. Usually I sit on the sofa with my knees up and feet on the sofa to take the stress off my lower buttocks. I'm sorry your pain is so constant. When mine is an 8 or 9 it's all I can think about too. Sometimes I take opioids or muscle relaxers at that point but they don't do much for me.
It’s nice that u can do some things!!! I hope u can enjoy what u can!!! I have to sit on my heating pad most of the day!!! It’s really depressing and always on my mind as my pain is 10+ all day EVERY day and that’s all I can think about! I try to do other things but I can’t! It’s just never ending! It got worse after my colostomy which we did thinking my rectal burning would stop! It made everything SO much worse!!! I need a break but can’t get one!!! I take opioids and muscle relaxers along with my pain pump and they do NOTHING!!! This is NO life!!! Keep up the good work and enjoy what u can when u can!!! I hope u will keep in touch!!! Take care and try to have a good day!!!
I had a MRN at UCSF too and it showed nothing. It was supposed to be a follow up to my first MRN at the Neurological Institute in Santa Monica run by Dr Filler. His MRN showed a “wound” in my right obturator internus muscle that disrupts the course of the pudendal nerve (confirmed by another Dr independently who knew the radiologist at UCSF). I hand delivered a copy of the disc of images to UCSF but they subsequently said they never got them. Filler is primarily a neurologist and operates independently and did a nerve block (which helped minimally for a short period). He did not recommend anything beyond the nerve block. I also went to Mayo in Rochester with the same images. They did their own MRI and said they saw nothing (but then confirmed that their MRI did not visualize the pudendal nerve). Then, through a course of events, I ended up on minocycline which completely changed my life for the better. Someone once told me, “you have to wait for medicine to catch up with you” - so true.
My obturator internus was a mess too!!! How did minocycline help u? That’s a crazy one to think about!!! Anything else that has helped u? I’d love to hear about your journey!!!!
I have read the book and done the exercises which is on another site called aidplan!!! NOTHING is helping!!!! I’m SO defeated at this point!!!! It’s been over 10 years of this!!! I’m sad and depressed and over this shit!!!! Thank u so much for the suggestion! Might read the book again!!!
Also try an herbalist I was put on valerian root and hops up to 3 times a day..I know how you feel 😢..but try maybe a natural approach again the only thing that helped me…and God…the more the medical profession touched me the worse I got..I did a lot of internet search under healing naturally..I truly do hope this can help..
Hi pizon!!!! I have tried valerian root with no help. What kind of hops and what is it suppose to do? I agree with leaning into god!!! I’ve been doing that for years but I guess he has more serious things to think about!!! It also seems that the more medical I do the worse I get so I’m stopping all of that too!!!! I’ve tried things on my own that I thought would work and here I sit in pure AGONY!!!! Today has been super hard and I’m once again discouraged!!!! I can’t go out and shop or exercise or garden cuz the standing and walking kill me!!!! This all has been going on too long!!! Thank u for sending me ideas!!! I appreciate your thoughts!!! I hope u keep on doing to the best of your ability!!!! I hope I don’t bring u down by talking about my pain!!! It’s my life right now!!! Wishing u the best!!!
no you will not bring me down..I fully understand I still have pain but have found ways to relive it my pain feels as if there is a ball inside of me (like a huge old tampon if you will) I have learned with certain activities such as driving to long…or the stress of driving on a crowded highway…or standing to long..the list can go on and on ..I just try to listen to my body…if I do not listen to my body then the feeling of a ball gets larger and feels raw like sand paper…as I have said before I am not able to do things I did before but have found new things to do….as far as the hops I buy from Amazon I have enclosed photos..again I have found that everyone is different I have also learned once a nerve is disrupted or upset other nerves around it will start to become stressed which can cause more pain..this is not an overnight fix I have found meditation 🧘♀️ to be very helpful…you can find programs that are free on line..i truly do hope this helps
I have tried to post a photo of the Valerian Root but it is not going thru…Now Brand I take 2 caps of each valerian root and hops up to 3 times a day..I hope this helps
Thank u so much for your kind words and showing me the HOPS! I have ordered both!! U take 3x a day? I’m glad u have found things u can do!!! I’m still hoping I can!!! I woke up this morning and the BURNING was out of control once again along with the feeling of being RIPPED apart!!! It has now gone into the perineum and lower buttocks!! This is absolutely crazy!!! I was using suppositories which helped but caused me hypersensitivity!!!!! I just can’t catch a break!!!! After my colostomy the urge to have a bowel movement is ALL the time like a pulsing heart in my ass!!! This feeling is SO hard to handle!!!! I’m reaching my breaking point after all this!!!! I’d love to shove a knife up there and cut it out! My colorectal has done everything he can so I’m almost out of options!!!! I appreciate u listening to me and giving me suggestions!!! Keep up the good work on your end!!! I hope to hear from u soon!!! Thank u again!!!
You are more than welcome..tell me what part of the world are you in? Have you looked into any type of herbalist or reiki? It sounds as if you have tried all medical options to no avail…please stay in touch I will be praying on you as well…as I said I am no dr. But the medical drugs treatments ect. Just made me worse I found when I started meditating 🧘♂️ and yoga and the herbalist I was also seeing a chiropractor who specialized in women’s health…have you received a diagnosis? Yes I can take the valerian root and hops up to 3 times a day I always take it at bed time..if you are taking Valium I would take the valerian root and hops 2 hours before…again I hope this helps
It was SO good to hear from u!!!! I live in Sacramento CA! Where do u live? I’ve seen EVERYONE!!! Nutritionist and dietician and hypnotist and acupuncturist and many pelvic floor therapists along with EVERY medical professional under the sun!!! No help!!! I’m doing a pelvic floor program from aidplan which I’ve been doing for a month but I haven’t noticed any changes!!! I use to go to the gym and do cardio and weights but haven’t been able to do that in four years!!! My life has definitely changed and not for the good!!! I’ve tried and researched everything but nothing has helped so I’m to the point I give up!!!! This is my life!!!!! God must have a plan cuz I wake up everyday but I have told him to take me now if this is going to be my life!!!! I’ve been through SO much with SO many doctors!!!! I’ve spent SO much money on supplements and things not covered by insurance. How do u get through everyday and what r your problems and symptoms? If u don’t wish to share no worries!!! I thank u for your kind prayers and I will be saying those for u too!!! I just want to be healthy and happy!!! I don’t know what that is anymore!!! I have NO idea what joy is!!! I don’t mean to be a downer but this has been going on too long!!! I wish u nothing but health , happiness and love!!! Talk soon I hope!!!
Townsend Delaware about an hour south of Philadelphia..my herbalist is in San Diego..he has helped me sooo much I have known him for years I have never met him in person we work over the phone…do you think you could trave to San Diego..I bet he could help you
Hi!!! Unfortunately no! I can barely leave my house at this point!!! I feel like I have a beach ball stuck up my ass almost all the time!!! I now feel like I have a fissure!!!! This is absolutely crazy!!!! I don’t know what to do anymore!!! Like I’ve said I have tried EVERYTHING!!!! How did u get better and what were your symptoms? I’ve been diagnosed with pelvic floor dysfunction and levator ani syndrome and obturator internus problems!!! Like I said I’m ready to stop reaching out to doctors and researching on the internet etc. I’ll just keep praying and hope something changes!!! Thank u for the prayers and kind words!!! U deserve all the light and good in life as u have a kind heart!!! Take care!!
Are you on face book? If so friend me …Annette Pisa..if you want he will work with you over the phone he can help yu cleanse ..he has truly helped me…he has given me accu pressure points …it is not an over night fix but for me it was a start that led to me being better…again I will never be the same that I was but am living the best life that I can and and found things that I never knew I could
Hi Annette! I just added u as a friend on facebook! What kind of symptoms did u have and how did u overcome them? Right now I feel like I’m living in HELL!!!! This is the MOST difficult thing I’ve EVER had to face in my life except my moms passing!!!! She was my rock and I miss her SO much!!! I can’t live like this!!!! How did the guy in San Diego help u? I get my HOPS and valerian root today!!! I’m pretty depressed today!!!! I hate waking up in the morning cuz I start stressing out!!! I don’t mean to be a Debbie downer but I’ve been through WAY too much and I can’t keep doing this!!! It’s overwhelming!!!!! How’s your day going? Do u have horses? The pics on Facebook r so pretty!!! I hope to talk to u soon!!! Take care!!!!
Hi, So sorry to hear your story, I can't believe after so many consultations you still do not have a proper diagnosis. I have the same pain as you and have diagnosed myself with Pudendal Neuralgia, as nobody else is saying otherwise. Maybe I haven't got that I don't know. Unlike you I haven't had much luck seeing anyone, our health system is going down the pan at the moment and no insurance company will take on pre existing conditions. So I can't even pursue it privately, and I can't afford to pay myself I'm afraid. I do know how desperate you feel though and can have sympathy with that. I have contacted a specialist here in the UK and am waiting to hear back to see if he is able to help me at all. I will let you know how I get on. I know this is not much help to you, only to know that you are not the only one😌
Hi. I don't have much in the way of brilliant suggestions but I can feel your pain and am sorry that you are having to go through this, it must be awful and so debilitating.
I wonder if you have tried a stool softener or something to bulk the bowel motion? Lactose is the former and Fybogel (which is Ispaghula husk) is the latter but I am in the UK, so branding could very well be different. I am just thinking that anything that helps a motion pass easily and quickly could help.
Eating certain foods can help with constipation, perhaps try popcorn, liquorice and peanuts?
Have you been prescribed Pregabalin which helps with nerve pain. This helped me when I needed it.
You have probably tried all of the above but just in case, I thought that I would chip in.
Meanwhile, sending you love and hugs and hoping that you find some relief.
Thank you! Yes, I have been on been stool softeners and laxatives and a constipation diet for many years. I guess I am losing weight because I don't want to have to have bowels movements even liquid ones. Again, this is no life. The bed to the tub seeking relief. Only out to go to doctors who don't help. Someone has to be missing something!
I am starting a prescription laxative soon and going for a either a CT enterography (if approved by insurance) or a small bowel series next week. I think chronic constipation is a major contributor to my PF pain and I've not been able to get it under control. A recent colonoscopy showed only a bit of diverticulosis but I think something is wrong with my bowel function.Try to keep your weight up, especially with protein if you can, as we women lose too much muscle as we age.
Hi I have been managing similar condition myself as given up on doctors. I take D-Mannose to neutralise urine instead of taking nitrofurantoin. Also my dietician has me on a FODMAP diet ie no gluten or WHEAT. No fructose (no Apples or onions or garlic). What a difference this has made. Also for breakfast instead of toast, cornflakes with oatmeal sprinkled on top for roughage. Cut down on coffee no caffine. I feel much better altogether. I have also lost a stone in weight which helps with my arthritic hips (one replaced). Doctor asked if I take D-Mannose as this helps for sure.
Just wanted to mention that I do take D-Mannose as suggested by one of the 19 doctors. Baclofen and gabapentin. Valium and ketamine suppositories both vaginally and rectally. None of which helps.
I just saw this in my inbox. I am so sorry for your suffering! Horrible! I have had all the pain you mentioned. It went on for 12 years. I have pudendal neuralgia, obturator neuralgia, piriformis disorder, coccydynia, all started with transvaginal mesh. But nerve/muscle damage anywhere in the pelvic floor can cause this. I have hypertonic muscles of the pelvic floor.
I have tried so many things! Tens, interstim (did reduce pain 50% for two years, then stopped working) PT, Massage, pulsed radiofrequency ablation, sola therapy. I was injected with cortisone several times, opiates helped, but did not take away the pain. Suppositories helped (Valium, baclofen, lidocaine). B&O's work really well for bladder/bowel. If you can get them. Stretching also helped.
Currently my pain has subsided - from getting pulsed radiofrequency ablation on both pudendal nerves and doing the 9x sola therapy (total cost $2,000). My husband and I were skeptical because it used a laser. We've had this doctor for 12 years, so gave it a try. I was able to ride to home 11 hours without any pain medication! First time in 12 years. This has been since end of June. In the last few weeks some of the pain is resurfacing (clitoral, labial, rectal) but it is manageable at a 2. I am down to less than 1 oxycodone a day! Mostly for physical addiction.
The problem with the pelvic floor is everything is interconnected. So pain refers. For example I had a small 2cm piece of mesh left in my right obturator and it caused right sided vaginal pain, not even close together. Because our muscles tighten naturally when there is a "threat" (anything out of the ordinary) they pull on one another. They work with the nerves. So damage pretty much anywhere in the pelvic floor to a muscle or nerve can cause a cascading effect. Once the muscle tightens, the next one picks up the load that one was supposed to carry. And on it goes. Getting the pelvic floor to relax is a high priority. Sometimes a good/great pelvic PT can get that to happen. I wasn't able to do it, but I had a lot of physical damage from the mesh. This sola therapy in combination with pulsed radiofrequency ablation has been a God send for me. It did relax my muscles some and relieved pain. My doctor told me I am the worst case he sees. There were 4 of us he chose to start with. The other 3 (no other mesh patient) did well from the get go. I had a harder time, and at the last treatment was not sure it helped. Over the next week I got better and when we drove the 11 hours, no pain! Then I knew it worked. From what he said the other patients saw results immediately. It is expensive and requires 3 weeks of every other day (3x week) treatments. Which is time consuming as well. It is supposed to last 9 months. I guess I shall see, too early to tell yet.
Botox made it so I could walk. But O was still in a lot of pain, got them every 3 months and they were excruciating. I don't miss that. I sure hope this latest therapy helps me for the long run.
It's awful to be in so much pain after trying many different physicians and treatments. I too, experience pelvic pain and have yet to find anyone who can diagnose me. in Toronto, Canada. Apparently there's a Dr. Goldstein in Washington who is an expert in this area. He heads up the Center for Vaginal and Vulvar disorders.
Try reading Heal Pelvic Pain by Amy Stein.It really helped me understand as I had similar symptoms. Walking daily,gentle dance class and gentle yoga also helped.
Co- Codamol for when the pain was really bad.Warm baths and aromatherapy massages.
A high fibre diet if constipated.
Pace yourself. Do a little physical stuff then rest- sit or lay down. Standing up was easier than sitting for me. Was referred for a pain management course through my Dr.
I too saw many Drs- all useless apart from one older female one.I always ask for a female Dr now.
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Post Mesh Nerve Damage
Levator muscle syndrome; Levator ani syndrome
