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Has anyone had to quit their job due to pelvic pain?

xcht profile image
xcht
28 Replies

I'm 21 years old and i'm struggling every single day. When my pain is at its worst I have it in a certain point in my groin, round my lower back, bum and legs. making it so difficult to walk. Every movement is an effort and it's effecting my life so much.

I'm getting an MRI on Monday and i'm pessimistic about the results, I wont know where to go next if that comes back normal and I'm really thinking about going on the sick.

How do I get financial help if I can't "prove" my pain due to no definite diagnosis. I'm just at my wits end and don't really know where to turn or how I would manage without work.. But at the moment it's agonising and so hard because I'm feeling like nobody is believing me.

I live in the UK and have been trying to deal with this for 2 years and I just feel like I can't anymore

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xcht profile image
xcht
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28 Replies
Sky58 profile image
Sky58

Hi so sorry to hear about your pain . I am much older than you ie in my mid fifties but your post struck a chord with me as I have experienced something similar . I have suffered leg and back pain for some time now and about a year ago it moved into my groin. The Mri scans all showed the pain was not coming from my spine yet I feel pain down my sciatic nerve. After many consultations with orthopaedic surgeons who said nothing was wrong I have finally been diagnosed with trapped nerves in the pelvic region. I don't know where you live but I saw a pain specialist in Manchester . I am now unable to work as the flare ups are unpredictable but I do manage on medication. I take gabapentin . You don't say what medication if any you are on because it does make a difference. If it is nerve pain it can be calmed down . I am just coming to terms with having to give up a job I loved. However you are much younger and your first priority is to get a diagnosis. I suggest you wait for the results of your scan and take it from there . You might well have a herniated disc where something can be done. Good luck

xcht profile image
xcht in reply to Sky58

Hello thanks for replying. I have had a laparascopy and an MRI on lumbar spine so no slipped discs :( I would describe it as nerve pain as I am taking gabapentin and that helps to an extent. it's so bad at the moment I'm on morphine. I'm just very weary of this next MRI. every test I've ever had has come back normal and I'm just not sure where to go with it all, I feel like I can't push on anymore

in reply to Sky58

Well said. Diagnosis is EVERYTHING. It's a long, scary road getting to diagnosis. Treatment begins another chapter and as you noted, is only the beginning. The flares, the pain, the lifestyle changes... it can be brutal. That said, you nailed it... DIAGNOSIS is the first step to getting to the point of trying to manage it.

Mystory4u profile image
Mystory4u

Hi Chetchie, I'm so sorry to read about your pain. It's awful that you don't feel supported by those around you (are people at your work sympathetic?) It seems to me that if people can't see something like an illness that has no obvious physical signs they find it hard to understand or relate to. Try not to focus on what other people are thinking (or not thinking) and focus on your own healing journey and supporting yourself as positively as you can. I had a very bad leg pain at one point in my life and presented to an emergency centre where the doctor gave me acupuncture because I am very sensitive to drugs. The acupuncture worked - even helped the nausea I had from the pain. I guess what I'm trying to say is that you might like to consider not relying on just conventional western medicine. It has its place and don't turn your back on it but maybe in tandem you can also seek help from some manual pain therapists and consider acupuncture to help you relieve your symptoms? Over the years my husband and I have used traditional Chinese Medicine, acupuncture, meditation and nutrition to address some difficult health problems with some success, but always in conjunction with western medicine. That said, once you get an opinion from the orthopaedic specialist you might want to get a second opinion from a neurosurgeon - I used to work for one. If something involves nerve endings or the spine, best to see a good neurosurgeon!

Wishing you health and happiness and freedom from pain.

Mxo

Emmax profile image
Emmax in reply to Mystory4u

Hi there,

I had very similar symptoms and spent three years under a blanket with hot water bottles and on morphine.

I too had every test which didn't show up anything significant but they thought I had trapped nerves. I did but from muscles going into spasm and putting pressure on nerve paths.

Try and avoid more invasive treatment such as nerve blocks and surgery until you have seen a super duper women's Health physic.

I am now under Helen Keeble at Whitehart Lane in Barnes. I am now 80 percent better.

I did have to do some intensive therapy with her and it was costly. I now go once a week and she has given me my life back.

Hang in there and keep looking for answers.

I am happy to answer any questions.

Emma x

xcht profile image
xcht in reply to Emmax

Would you recommend physio or a chiropracter? I do suffer with my back and Ive seen a chiro before, he's now contacting me to book in again but it's all really costly.. Don't know which would be better for me?

I'm definitely going to try something like that though! I'm sure it couldn't do any worse damage !! x

xcht profile image
xcht in reply to Mystory4u

Thank you so much for replying. Yes they are understanding in work to an extent, but I am constantly in pain and trying not to show it because I'm afraid I'll get fired. I got sent home today because I was just a mess. Doctor just gave me oromorph and sent me ony way!

I will definitely ask to be refered to a neurosurgeon, Thankyou!!

Sky58 profile image
Sky58 in reply to xcht

I went to a neuro surgeon following my mri scan. As I said before the pain was coming from my pelvis and not my spine. If your pain is not associated with your spine have you thought about going to see a pain clinic. I also tried acupuncture to real ease the tension in my buttock muscles which were tightening on the nerves. It did not work for me but might for you . Another thing I have found useful is a spiky ball from a Physio which when pressed against the muscle helped release them when they went into spasm. Good luck and I hope you find a diagnosis soon

xcht profile image
xcht in reply to Sky58

Was your MRI clear? I am going to ask my doctor to refer me to a neurosurgeon because I am positive it's something to do with my nerves. Only because I get the shooting pains down the front of my legs.. not like sciatica. It also radiates up my back and round my hip. Also I find gabapentin does help so that does lead to nerves again.

My doctor has suggested acupuncture to me actually, I think I am going to try it.

Thanks for replying :)

xcht profile image
xcht in reply to Mystory4u

Thank you so much for replying ! It's definitely a running theme here from all the comments: Acupuncture, neurosurgeon and orthopedic specialist! These are the next things on my list. The frustrating thing is the waiting time to see specialists but i've waited this long I suppose.

With regards to acupuncture.. I know it's not the same thing but would a chiropractor be better or stick with acupuncture? It's just that I saw a chiro and he is interested in seeing me again, just don't know whether its worth going back xx

Mystory4u profile image
Mystory4u in reply to xcht

Hi chetchie, whether you go back to see the chiropractor is a decision I think you'll have to make based on your previous experience with him/her I guess and maybe what you think this person can offer. Acupuncture is quite different of course and you shouldn't have to wait to get to see an acupuncturist (they're usually trained in traditional Chinese medicine). If you haven't had acupuncture before maybe it's worth trying to see how well you respond? I see an acupunctist who is in the same practice as a chiropractor... For the record though when you see the neurosurgeon best not to talk about seeing a chiropractor unless they ask you directly (then don't lie) because they are pretty much mortal enemies (without fail neurosurgeons think chiropractors are 'quacks'). It's because one comes from conventional medicine and the other from alternative therapies and neurosurgeons tend to distrust them completely (from my experience in working for a top neurosurgeon in Australia). Also if you call and talk to the specialist's secretary and explain very nicely your predicament and ask to be out on a waiting list for any early cancellations of appointments you may get in quicker (remember to sound very professional and ask her name nicely etc). Then check in with her every so often without becoming a nuisance and you may get in much sooner. Hope things start to work out better for you! Thinking of you and sending wishes for health and healing.

john06 profile image
john06

I have the greatest sympathy having had two years of this kind of pain. In my case it was almost entirely solved by a small dose daily of amytriptiline - in my case 20mg. Of course I cannot know whether it would help in your case but it may be worth mentioning it to your GP.

As to financial help if you could not work, try making an appointment with your nearest Citizens Advice Bureau. You can find where it is at the website adviceguide.org.uk. They are set up to advise about possible benefits.

xcht profile image
xcht in reply to john06

Thank you for the advice, I have tried ampitriptiline but it made me feel hungover all the time and interfered with sleep :(

I will look at citizens advice, thank you

marybeex4 profile image
marybeex4

Hi, Like you, Pelvic pain has given me four years of real discomfort. I started in a pain clinic and four years down the line ended back in a different one only to be told Pelvic pain is something I probably had to get used to living with!!! By then I had a little more knowledge about pelvic pain ( all found from this site and suggestions of where to look etc) and i asked a couple of questions but was told that I was probably talking myself into some named condition!!!!

I left in tears, but they were tears of complete frustration. Thankfully through reading and learning more about pelvic pain from others on this site I was able to speak with my doctor rationally and with some sort of knowledge, it meant at least I was able to get better pain killing medication!

My only advice is don't give up - there ARE experts out there and by following suggestions and reading of others in similar situations you will find a way through. No one can understand that depth of pain and in the late hours of the night when everything seems so much worse, then this site is a wonderful place to share your distress and your problems. It certainly helped me!! I was at the end of my tether, I couldn't get the pain down and I was very tired and unhappy. Not suicidal but I just didn't know where to turn or what to do. Here I found others and I learned. I hope this is of some sort of help because I so understand that frustration and fear.

Good luck and keep positive!

xcht profile image
xcht in reply to marybeex4

Thanks for replying. It is really hard but

xcht profile image
xcht in reply to xcht

I do find this site useful. Be it finding more theories to present to my doctor or just support when you feel like life couldn't get any worse haha. I just want to be freeeee of it!! it's relentless! Makes me feel so much worse when no tests are showing anything either. For all the pain i'm in i'm expecting them to just say "Here it is ! this was it all along this big massive unmissable thing?!" but nothing. Makes no sense to me lol :(

I hope you feel better soon and someday get rid of it completely. Wouldn't that be great

juliansmom profile image
juliansmom

Join the national vulvodynia association and request info on how to apply for disability based on your diagnosis when you get one even if your scans are clear and they diagnose you with chronic pelvic pain. See a specialist there are meds out there that can make your pain manageable but you must be persistent and educate yourself and listen to your own body. Sorry your so young to suffer but there is help and hope.

pauline19 profile image
pauline19

Reading the replies prior to mine, I'm kind of confused. Has no person in the UK even heard of Pudendal Neuralgia? This happens when nerves are entrapped in either Alcock's Canal or some other area, possibly elsewhere in the hips. Labral tears of the hips also mimic this pain, which can manifest in the vagina itself, the vulva or even the rectum. I have all three.

There is also something called Occult Spina Bifida, which is extremely common (about 25%+) of the population in general. This happens when a mother has MTHFR genetic variants which make folic acid useless to her and the developing baby. (Folic Acid is different from FOLATE, which is becoming the standard of pre-natal vitamins in the US). So, because they didn't used to supplement folate AT ALL during pregnancy, I have this is a NEURAL TUBE DEFECT. Many people are walking around with Spina Biffida Occulta and in HORRIBLE PAIN. To check yourself for this is EASY. In a neurological exam, one of the tests they are supposed to do is ask you to walk heel-to-toe and keep your balance. A person with Occult Spinal Bifida will not be able to do this at ALL. They will fall over to one side EVERY SINGLE TIME THEY TRY TO PUT THAT FOOT IN FRONT OF THE OTHER! Look on you tube for "neurological exam" or on the internet of the same, and you'll see. Some patients cannot do Romberg's test, where you stand with your hands at your sides and eyes closed. If you start to drift over, like going to fall, you are POSITIVE Romberg and will fail a roadside sobriety test. There is Gasset's test where you touch the doctor's finger then try and put the same index finger to your nose. Occult Spina Bifida people have trouble doing this to some extent. This condition is usually found in CHILDREN, but so many doctors never ever do even the very basics of a complete neurological exam that it is missed. It should have been seen in me decades ago, because it is a PEDIATRIC surgery, but I had it done anyway and it helped a great deal. I knew, just KNEW that the tiny annular tear on my L5 disc in my back was not the source of pain. In my case it was a symphony of disasters! Most medical conditions are MULTI FACTORIAL.

I finally found a neurosurgeon detach my spinal cord so that it could slide up and down when I bent over or flexed side to side. Once in there he found a Tarlov Cyst which is actually dangerous because it can cause paralysis if left untreated and it ALSO didn't show up in the imaging. The tethered cord wasn't either, but this guy knew what to look for. People come from all over the world to see this MD, he is so famous [Dr. Fraser Henderson, Metropolitan Neurosurgery, Chevy Chase Maryland]. The condition is called Tethered Cord Syndrome and it causes, oddly enough, headaches PLUS lower back pain, neurogenic bladder--meaning your bladder will hold buckets of urine and you won't notice until it's pouring out of you as you walk, plus the UNREMITTING PAIN that nothing AT ALL helps. I tried the amytriptiline for the bladder and it helped a little but then I developed an allergy to it. Plus I kept hitting the curb when I drove because it causes some minor spatial perception problems as the spinal cord isn't able to move freely in the spinal column.

Other causes of pelvic pain? READ ON.

I am in my mid 50s and fractured tiny bones in the pelvis called the inferior pubic rami, JUST BY HAVING REGULAR OLD INTERCOURSE with my husband, and I barely had a tiny bit of osteoporosis. The pain was immediate and I went the next day to my pain/back doctor and the gynecologist too. The pain guy orderd the MRI, the gynecologist said, "oh you're just dry, nothing more." But I felt like I was having a baby--around the clock! Like HARD LABOR, with a baby STUCK in the birth canal-type pain, and there was blood on my panty liners. He again said, you're dry, because you're going into menopause. I had to remind him that I had had my hysterectomy 22+ years before and went through menopause THEN, and that HE was the MD who put me on Hormone Replacement! He rolled his eyes, prescribed vaginal estrogen and told me to come back in 3 months. But I made them see me again after 3 WEEKS and brought the imaging studies including the discs so he could look. My husband begged him to look and see did the radiologist "miss something."

I had gone for the MRI 72 HOURS, not weeks, or months after the "injury" of god-knew-what, but his nurse and staff were angry, telling me I was 'wasting' his time. My husband said, "You're getting paid, so Think!!" but they wouldn't look at the pictures or examine me again.

As it turned out, the fractures were actually clearly visible in 2 MRIs and one CT scan, but no radiologist mentioned them in reports. I was referred to a pelvic surgeon (I was already post-abdominal hysterectomy by 23 years then) but had had three other pelvic surgeries and an appendectomy. The pelvic surgeon identified the Pudendal Neuralgia by doing a standard vaginal exam that any gynecologist would EXCEPT---

He pushed his finger on each side and the back of my vaginal walls as he moved centimeter by centimeter down toward the outside, from my vaginal cuff out, as I hollered in agony (if you have your cervix it would be from the cervix toward your opening). He gingerly pushed, eliciting pain. This is called Tinel's sign when they provoke pain to identify the location. He called out to the nurse a number (I guess HOW LOUD I SCREAMED haha) and said, "do you know what Pudendal Neuralgia is?" Yes! I did know (I used to be a nurse too). He had NOT SEEN ANY OF THE IMAGING STUDIES of my trunk and abdomen, but referred me to a Pelvic Pain Gynecologist plus a pelvic physical therapist.

I sent the computer discs of the CT and MRIs to this physical therapist first while waiting for the appointment with the special gynecologist. The PT called me and said these horrifying words, "Are you still immobilized from the fractures?" Me: "What fractures?" Her: "My god--you don't KNOW???" AARGH!!

She then referred me to yet another orthopedic specialist who pulled up all three images on his computer and said, "They were seen each time you sought care. You have a lawsuit here." I should have been immobilized immediately for the fractures to heal correctly and now it's too late. There are doctors who specialize in this condition, just a few, but on just across the English Channel, in Nantes, France. The doctor who has a team there is Professor Roger Roberts, who does the Pudendal release which helps many women. There is a website called Pudendalhope.info (I think, but just search "pudendal release Nantes" and his name and contact will pop up. In the States there are 2 docs on different coasts--Dr. Michael Hibner (who has a great article on diagnosing and treating the condition) and Dr. Lee Dellon, who specializes in all manifestations of this. There's another doctor in Turkey.

As a complicating factor, many women have Tears of the Hip Labrum, which is just like it sounds. And feels the same. There can be cam and pincer impingement. I have it in both sides of the hips too. This is similar to a rotator cuff injury in the shoulder but worse because you hurt below the waist. Plus it kind of "activates" all manner of perianal nerves all over your pelvis. Many women have those hip sockets "cleaned up" of the torn cartilage--the labral tissue is cartilage and if you're genetically unlucky and have any kind of hypermobile joints, these tears can happen without you even knowing) but that often leads to hip replacement, another can of worms as we say in the States. Some older doctors believe the cartilage doesn't have innervation, but now they know there are LOTS of nerves and where there are nerves, there can be pain. See good explanation of this condition here:

methodistorthopedics.com/la...

My fractures happened 26 months ago. My husband and I cannot have sex, or even kiss or hug because any kind of arousal causes the pain to worsen. I must travel laying across the back seat of our car on 6" of foam rubber and still scream going over the slightest irregularity in the road.

I did get the CT-guided pudendal nerve blocks for the PN but they didn't help. That interventional radiologist tried three times with hundreds of shots with me getting tons of radioactivity from the CT exposure (adding to my crazy bad cancer risks with THAT) but the "architecture" of the pelvis is slightly altered the shots didn't work. They tried acupuncture. No help. Did vascular scans to see if the veins and arteries were "congested", whatever that is. Nothing with that. But "pelvic venous congestion" can happen to many people with no known cause.

Bladder cancer and Interstitial Cystitis can cause problems with pelvic nerves too. I got bladder cancer, but the malignancy was all excised, but then a different doctor stuck a Foley catheter in my bladder which subsequently no other doctor would take out and I got a rare form of Candida infection and was on anti-fungals for a year. (c. Glibrata, very rare, usually picked up in hospital, but I got it from MDs handling that Foley catheter bag and the drain tube for the two weeks it was in--it needed to be removed after 48 hours!). And that caused continuous urgency and frequent bladder infection and Mast Cell Activation Disorder of the Bladder Secondary to IC and bladder cancer.

The labral tears and the associated impingements in the hips is diagnosed using CT with contrast imaging and it's very specialized. It's called a CT Arthrogram in the US. You need a hip orthopedist usually.

There is a book called "A Headache in the Pelvis" by David Wise and Rodney Anderson, which talks about EVERY POSSIBLE cause of pelvic pain. I read it cover to cover in two days (it's long, but when you're in agony you read FAST!)

available here as an ebook for $10US. It's on amazon in regular book or kindle addition.

store.kobobooks.com/en-us/b...

also in google books and other places. Easy to find used too. It's in it's 6th edition, so you know it gets used a lot to teach MDs.

Here are some other things to consider:

1)If it were simple sciatica then just walking as your primary exercise would help, if it doesn't it's not sciatica. Unless it has been proven by an EMG-nerve conduction test, then it's not sciatic nerve pain. Even if it hurts in the sciatic nerves.

2) A pain specialist with special training will know that labral tears HURT. And not usually when the injury happens! It's a silent injury very often and the pain comes later, making it hard to figure out how it happened at all. Most orthopedic specialists know the pelvic pain arrives late, and if you've exhausted the usual culprits for your pain, look at orthopedics again, but look for a hip orthopedist. If they tell you, "oh that can't be the source of the pain", then go! Run! elsewhere. Like its cousin PN, Labral tears can make sex hurt, and feel like you're in childbirth without pain relief. Like IC, it's not unusual to feel downward pressure for no apparent reason.

3) There are two US support groups for IC and they sell (through amazon here) cushions with a channel cut out to make sure your crotch doesn't hit the surface. This is different from so-called "tailbone" or Coccyx pain, cushions which have the cut out in the BACK. You need it to look like a canal was dug from front to back of the cushion. It helps a lot when you have to sit somewhere.

4) DON'T USE ANY KIND of NON-COTTON feminine products! They are made with plastics and horrible chemicals which will aggravate all manner of pelvic pain. When I searched "cotton panty liners" on amazon I found four different brands of disposable pads, tampons, wipes etc. Stick with COTTON! No nylon panties, no microfiber panties, no panty hose without cutting out the crotch and NO SCENT!!

There are MDs who can diagnose this and TREAT IT treat these conditions and if you bring up these possible diagnoses, they might help you. Don't lose hope. You're young and it can get better.

5) If you douche, ONLY use boiled distilled water with a touch of either sodium bicarbonate or a bit of hydrogen peroxide if you suspect a yeast infection and recolonize the vagina by using probiotics INSIDE you, not taken by mouth, put put UP there, after you "wipe the slate clean" with your water/peroxide douching. Be careful to only use a bit. Go to "curezone" online and look up vaginal problems.

6) It could be a post-viral syndrome. Epstein-Barr infection, just like varicella, can make your nerve endings turn against you and be crazy painful. So trying to see an Infectious Disease specialist would make sense to pursue, especially if you remember having a soar throat some time before the nerve pain started. They can do an Epstein Barr blood panel and put you on anti-virals, acyclovir, valcyclovir to fight the virus.

7) Pelvic Organ Prolapse--If you reach "in" and can touch your cervix, then make your gynecologist exam you STANDING UP (YOU stand, not the MD, lol). This happens to people with hypermobile joints or collagen disorders such as Ehlers-Danlos-- Dr. Grahame in London for this--the Beighton Scale you can see on you tube or lupus, usually many years before any other symptom of the disorders. It's all POSITIONAL. So it might be that your body "disagrees" with your sitting.... I had pelvic organ prolapse but I went to 5 different MDs who all said things like, "I could teach anatomy from the position of your organs," but 25 years later it was "discovered" that most of my visceral organs are REVERSED (partial Situs Inversis, very rare, but rare doesn't mean NEVER of course!)

8) Inflammation of abdominal organs or intestinal necrosis or obstruction can happen SLOWLY and hurt the same way as what you describe. My sister complained to years about pelvic pain and then, BANG!, they had to take out 4' of dying intestines, and the pain went away! You just never know till you're opened up because doctors think the MRI can't "Lie" but it CAN lie, and my sis and I are proof of it.

9) Fallopian tube infection or Pelvic Inflammatory Disease, which can be subtle, but dangerous just the same can cause pain as you describe. I kept a log book of symptoms which helped me save my fallopian tubes and I was able to have two children which wouldn't be here today without my "Symptom Log Book" keeping track.

10) Don't forget that you could have one of these problems above, or MORE from the same list! I had three, but met a lady with 5 and a young man with most of the conditions too (he didn't have vaginal or vulvar pain of course, but pain all the way to the end of his, um, male organ. And it put him in a painful state of "hyperarousal." You'd think that would be fun but it's pretty painful.

Lastly, one of the best tests you can do on yourself for Pudendal Neuralgia is to pay attention when you go to the loo. If the pain is relieved by sitting on the toilet, then YES, you can be sure it's pudendal. I spent months sitting in the water closet, husband yelling, "did you fall in??" with me saying "it doesn't hurt as much on the toilet!"

And to keep some idiot doctor from saying, "oh you need to eat fiber," take a laxative or some magnesium citrate in the days prior to any appointment to establish that you're not constipated.

I'm very sorry Chetchie that this has hit you. Pelvic pain and lower back pain are so very hard to live with, and you can feel like your femininity has been taken from you during the arduous diagnostic process especially since it involves several specialists and tests that are unusual. But keep looking.

I hope my story gives you some ideas to consider. Hugs to you :-)

xcht profile image
xcht in reply to pauline19

This is all very useful and I can relate to alot of the things you've mentioned. Thanks for taking the time to write to me, I do really appreciate it.

After mentioning pudendal neuralgia to a general surgeon he has suggested I get injections or nerve blocks into the effected area. I'm not sure when I'll be able to get one of these but I will definitely try it.

Thanks so much again for sharing your story and I hope you find some relief along the way :( It is very hard.. but mainly it's frustrating that so many people can be left in pain in this day and age. It just doesn't make sense !

Themommy profile image
Themommy in reply to pauline19

I am sorry to get in the middle of this with my own story, but I am amazed to have found your story, Pauline. My 14 year old daughter has been suffering with vulvadynia for 2 years and was just diagnosed with spina bifada occulant this morning. She has to have an MRI to check on tethered cord. FYI, she has terrible propreoception (you discribed bumping into curbs) Do you think the spine problem could be the cause of her vulva pain? If so, where in the world do I take her?! This has been a total nightmare.

If you get sick notes from your Gp you can get ESA or Pip I'm on ESA have been since last August I'm waiting for a assement to be placed In a wrag or pip

xcht profile image
xcht in reply to

Thank you I will look into it

2cv1964 profile image
2cv1964

I'm so sorry you are in such pain at such a young age. Please persist with a neurologist as it does sound like trapped nerves or displacment of the pelvis - you have so much different info above - a bit confusing for you. Try to get a book by Amy Stein 'Heal Pelvic Pain' from Amazon or book shops - she teaches you the methods of breathing properly and gentle relaxation processes and stretches. Be careful about going to Chiroprac/Osteopaths etc as without having results from MRI or a diagnosis they could make it worse. Amy covers all types of Pelvic pain issues in her book. It is helpful and encouraging. I wish you masses of courage and hope you find an answer soon and be 'pushy' with your Dr and get some sick leave to relax for the meantime.

kind regards,

2cv :-)

xcht profile image
xcht in reply to 2cv1964

I don't know how I've only just seen this but thank you for replying. I will have a look at that book now :) x

phlutter profile image
phlutter in reply to xcht

How are you doing? Have you made any diagnostic progress? Would love to hear how you are feeling...

xcht profile image
xcht in reply to phlutter

sorry I haven't replied earlier I haven't checked in. been trying to manage it with cognitive therapy and seeing a chiropractor. no better no worse. They have "diagnosed" me with pudendal neuralgia after a nerve block but I have refused surgery. They have also "diagnosed" me with Adenomyosis down to the feeling of giving birth and pressure I get at period times. Every specialist has a different opinion. I am swaying more towards to Adenomyosis but I am not doubting I have nerve damage in the pelvis as well. I think it could be due to the adeno. My pain is worse at ovulation and period time. I'm just trying to cope. On tramadol and trying out topiramate instead of gabapentin at the moment. and oromorph on the really bad days :/ So no miracle cure as of yet lol.. Wish it would just all go away

Charles555nc profile image
Charles555nc

Two things to look into, since Ive multiple surgeries that did not help much with ultra elusive pelvic pain- your tailbone can be causing pain (which can be diagnosed with a ganglion of impar block), or pudendal nerve entrapment which is everywhere your nerves are you are talking about. I would go with the ganglion of impar block 1st because pudendal blocks almost always numb your pelvis but might not be the root cause. To put it another way, the higher up you block, the more it will get "downstream", but it doesnt mean the pain is coming from where you blocked. If you are in the US, apply for disability early, because it takes up to 2 years for them to stop auto denying everything. Look for quality pain management doctors who can nerve block and know what they are talking about. Theres pudendalhope.info for pudendal pain and coccyx.org for websites dealing with each (and surgeons). Ive had pain for a much longer time, so do yourself a favor and look into this stuff.

Martinre profile image
Martinre

Have you got better?

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