Feel like giving: Well I have been... - Pelvic Pain Suppo...

Pelvic Pain Support Network
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Feel like giving

Buuldog
Buuldog
31 Replies

Well I have been suffering pelvic pain for 30 years, every year I have got a little bit worse. I have had about five attempts at getting something from the medical people to help but without success. The location of my pain has changed I now have most of the pain in the pubic bone / groin area that radiates out.

Every day is a struggle to carry out normal activities like walking, I have pushed myself for thirty years but am now running out of the resolve to keep going, do I just accept that I am disabled and withdraw from life !,! this is not particularly appealing.

I have got to the stage where I think about the end frequently, don't get me wrong I have never been unemployed and have literally crawled up the stairs in railway stations to get to work. so I am no quitter having held down a responsible job. But the flare ups are now more frequent and I have been incapacitated most of the year with pain.

Six months ago I went back to my GP and asked for a referral to the UCH in London, I attended an appointment there 2 weeks ago, they are going to arrange an MRI and I have another appointment in three months time. I see this as my last chance however they told me that the MRI rarely shows anything. I asked what would happen next should this be the case and was told that they could try an injection but that these more often than not do not work.

So here I am waiting another 3 months for the follow up appointment, I am disabled by the pain and gradually withdrawing from life. I have always been someone that wants to achieve something, the couch potato life is eroding and not for me. I take tramadol but this only takes the edge away, I tried Gabapentin but this made my legs swell up.

It seems that the medical profession do not have much else to offer therefore there is no reason to be optimistic. If anyone has any other suggestions they will be gratefully received, at the moment all I can see is decline and the end.

Regards

31 Replies
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kalecolbe12

Have you tried alternative things like acupuncture,hypnosis,reiki,CBD oil,pot,or things like that?

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Buuldog
Buuldog
in reply to kalecolbe12

I have tried CBD oil but cannot say that this has been of any real benefit, not sure what to do next other than wait for my next hospital appointment in November, however I am not optimistic that this is going to help in finding a solution. I do not want to accept that I am disabled and give up on everything that I have enjoyed doing but things look gloomy at the moment.

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Gab63

Hello, sorry to read about your situation. Mines been 5 years if 24/7 painwith 5-6 acute flare ups per day. It's taken until 2 months ago fir ne to find a competent doctor who took me seriously. I had been begging for MRI for 4 years but previous doctors all said "no need" ... they treated me with contempt and made me feel inferior and alone. Finally my new doctor immediately had me hospitalized a few weeks ago, and this led to an MRI and a PET SCAN, lots of blood tests, a bone marrow biopsy... etc.

the bone marriw biopsy cane back clear which is good but they also found an enlarged lymph node in my intestine area but cannot biopsy it coz it's too deep within the body.

I just feel like YOU NEED TO INSIST ON PET SCAN because it's the most efficient way to diagnose any possible problem. CT SCANS, ULTRA SOUNDS and MRI don't give the best images.

Sending you much understanding and sympathy for your position - ALSO, please know, this WILL PASS and you'll be ok . Try to rest within yourself. There are no major decisions for you to worry about right now. Take a moment off. It's been so many years and you e probably doesn't majority of that time quietly trying to figure out what on earth you're going to do with your life....

Don't worry about that anymore.. give it all up to the Lord Jesus Christ and Rest in His Strenth and His Peace. You will receive all you need to lead a happy life even though it might not be to your timing. Much love and I'll be praying for you, me and everyone who suffers such mind numbing pain. LET'S ALL ALLOW OURSELVES TO TRULY JUST REST. Instead of beating ourselves up about it all.

My life lessons. Gabriella 🕊🌺🙏🏻✝️🕊🌟😇

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Buuldog
Buuldog
in reply to Gab63

Thanks for your reply I to offer you best wishes for a recovery, this illness is cruel because the medical profession do not understand it, therefore without a diagnosis, other than the blanket chronic pelvic pain there is no effective treatment. I am sure that one day in the future this condition will be understood but unfortunately it will probably not be in our lifetime.

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kalecolbe12
kalecolbe12
in reply to Buuldog

You may also want to check out David mc cord and his DCT program

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pieper

i too was in pain for years and saw many many doctors. i finally found some relief with cbd/cbg oil. here is a link to the website thelightheartedfarmer.com/

Jerrik , the owner will walk you thru and tell you how much to take and truly help you with your healing, i was skeptical at first, but not anymore. i am feeling better every day!!! give it a try all you have to loose it pain!! good luck.

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Buuldog
Buuldog
in reply to pieper

I have tried CBD oil from a supplier here in the UK however it has not helped me. Maybe CBD oil is different from different suppliers.

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pieper
pieper
in reply to Buuldog

it definitely is and it is a long game, not a short one...i tried different labels as well, he is the real thing. i am not longer suffering everyday. 6 years of suffering is long enough, 30 years? no thank you.....give me a call or just email him...

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john06

I'm sorry to hear of your pain. Over that length of time you must have tried most things. Pelvic pain seems to be caused by a variety of things, most of which are not understood. All I can tell you is that amitryptiline helped me. This was advice from a consultant via my GP. I started with a small dose - 10mg daily taken at about 8pm. After a couple of weeks I upped tghe dose to 20mg and have maintained that dose for several years. The pain has completely gone.

I can only hope that it might work for you. All the best.

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Buuldog
Buuldog
in reply to john06

Hi I am on this now it has helped with sleeping but not with the pain

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Susiebic

I hear this from people in your country often. If there is no diagnostic capabilities, I suggest you leave and come to the US. Yep! Phoenix, Az has two of the best pelvic pain specialists in the country. Don't give up.

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Alaine1
Alaine1Administrator
in reply to Susiebic

Hi,

It is not anything due to capability as we have doctors from all around the world working in our NHS. The problem is down to the fact that the government have essentially not been keeping up with the necessary levels of funding the NHS requires. Yes there are a lot of people abusing the system in different ways but that is off topic. Scans especially MRI scans are given based on clinical necessity and what the particular doctor is looking for. Many conditions simply won’t show up on an MRI scan therefore it is a waste of NHS resources plus gets the patients hopes up that a cure will be found for them. This restriction on all scans isn’t just for pelvic pain but also rheumatology etc. I wish we did have unlimited resources but the doctors still wouldn’t give scans where it’s not necessary nor would they if someone went private - it’s simply unethical to do so especially as some scans require a radioactive material to be injected into a patients vein. There are very few types of pelvic pain that will show on a scan - endometriosis is a classic example. An MRI can be clear but the patient can be riddled with it. There are many faults with a healthcare system that is insurance based as those without or who can only pay a small amount have to often go without tests, operations and drugs as the deductible is too expensive. As a patient with 3 types of chronic pelvic pain amongst another 6 chronic health conditions I’m immensely proud of the NHS and all it has achieved in its 70+ years. Yes it’s taken me over 15+ years to get diagnosed with many of them ( due to numerous GPs not listening but that happens in all healthcare systems) but the care I’ve received from not only U.K. doctors but those from mainland Europe and beyond has been amazing. Two of my biggest supporters have been my German endometriosis specialist and Brazilian urologist. The NHS performs many miracles everyday but it’s so hard for us here who don’t always get a firm diagnosis or even if we do the treatment isn’t necessarily enough.

It’s one of the reasons I volunteer for this charity to champion the cause and keep on pushing for more research for all types of pelvic pain which benefits not just us in the U.K. but across the globe

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Susiebic
Susiebic
in reply to Alaine1

When someone tells you that there are specialists in another country that can help you, I can only think it is money. I have gone through other procedures less invasive to see if that is enough to stop the problem. Blocks, ablasions, but the only help came from surgery. I have heard of a surgeon in Nance, France that does surgery for trapped nerve.

An MRI absolutely does not show this problem. You have great faith in your system. I would not like it compared to US system. I think insurance is not prioritized by many and if you are uninsured and low income you can get care through ACCESS our low income program. You may be listening to fake news.

I am very sorry you are suffering. I still have 30% pain to manage, but that is possible now. I would do anything I could to get to a specialist. Maybe my surgeon could help you if you called them. Dr. Hibner or Castellanos in Phoenix, Arizona. They did go overseas to France. Keep trying.

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Alaine1
Alaine1Administrator
in reply to Susiebic

No I don’t have a trapped nerve, I have endometriosis, adenomyosis and an autoimmune type of interstitial cystitis which is very different. not all medical conditions can be cured but many can be managed. Some people are lucky enough to have their pain ‘cured’ completely but many of them have been diagnosed quickly which helps prevent central sensitisation of the nervous system. This is often the cause of ongoing pain in many chronic pelvic pain and other medical conditions alongside inflammation in some conditions. Surgery is not the answer for many medical conditions causing eg arthritis and can in fact make things worse, the same is true with repeated surgery for endometriosis unless absolutely necessary as adhesives can form and even when there is no longer any endometriosis to remove the adhesions are the source of ongoing pain. It is not uncommon to hear of patients having more than 9 surgeries even in the US where I’ve spoken to women who can’t get access to the skilled endometriosis specialists they need as their insurance doesn’t cover it and they are paying unbelievable amounts of money out of pocket to get treatment- I for one don’t call that progress. Doctors in the UK are completely against turning our healthcare into a privatised healthcare system. My best friend who lives in in New Zealand and has done for the last 12 years found herself unable to afford the treatment she needed via the insurance based system so had to wait in pain on a surgery waiting list via the state funded health care system. I personally don’t call that progress. I also have family who live in America, that particular branch of our family moved out there over 100 years ago and was my great grandmothers uncle so I hear news including the healthcare system from them.

The type of surgery you are referring to is called decompression surgery and doesn’t work for everyone even when carried out by the expert team in Nantes. We as a charity know the team in Nantes very well but unfortunately waiting times to be seen are extremely long now and two months ago appointments were bing booked for next year due to demand

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swarke22

I am just reading a book by Jack Challem that someone bought me called the inflammation syndrome. Only just started it but it’s very interesting that inflammation is responsible for lots and lots of western illnesses. Hope it helps.

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Alaine1
Alaine1Administrator
in reply to swarke22

It’s really interesting isn’t it as sugar especially is known to be inflammatory. I see a dietician and follow an anti inflammatory diet and avoid dairy, gluten in addition to sugar. If I need something sweet I have some dark chocolate but occasionally treat myself to dairy free smarties which I buy from an independent health food shop. Holland and Barrett used to sell them but stopped

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Buuldog

Thanks for your reply, I asked my doctor to refer me to the UCH in London because they are supposed to be the pelvic pain experts in the UK, this is why I see this as a last chance. I have only attended one appointment the next one is in November, the problem here in the UK is that you have to wait months between appointments, if you have something that is debilitating like this condition your life is just on hold and the months become years.

What sort of treatment do they suggest in the USA, I am looking at anything that might help. It could be that if I knew of something that is helpful I can ask my doctors about it over here.

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Susiebic
Susiebic
in reply to Buuldog

Dr. Hibner or Costellanos in Phoenix, Arizona. Contact them to see if there are specialists in Europe. I have heard there is one in Nance, France.

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Shellybelly5

Like you, pain meds merely took the edge off and did little to stop the pain. I found a pelvic floor therapist that treated me for a year. My initial pain had caused my muscles to involuntary retract and tighten to the point of constant pain. Once I learned to control those muscles and how to prevent them from spasms, my pain greatly decreased. CBD oil didn’t work for me, but Kratom has been a godsend.

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Buuldog

Hi I have not heard of Kratom before, are you in the UK !! if you are could you recommend where to buy this from.

I believe that at least a part of my problem is what you have described i.e muscle contraction, I think that this can then stretch or irritate the nerves.

Did you have hands on treatment from the therapist or was it a course of physical exercises to follow.

I am starting to believe that tight pelvic muscles are the route cause of our problems, but the doctors have not yet recognized this and are misdiagnosing or kicking this illness into the don't know box.

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Alaine1
Alaine1Administrator
in reply to Buuldog

Hi Buuldog,

Often it’s both, they might do internal work first if you have ‘knots’ in your muscles and then give you additional exercises later on. My physio also worked on my hips and back as the pelvic floor had an impact on the pain from there

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Buuldog
Buuldog
in reply to Alaine1

Hi Alaine I defiantly believe that a tight pelvic floor is at least a part of my problem and that I need to explore ways to treat this. I have recently attended an appointment at the UCH and am now waiting for an MRI scan, this of course is unlikely to show muscle contraction in the pelvic therefore I am expecting for this to come back clear.

I have a follow up appointment at the UCH in November and intend to discus this with them. Do you know if they offer physio at this hospital for a male patent.

I will have the MRI first but due to waiting times I might have to consider the private route, however I need to be convinced that I am seeing a knowledgeable person, I have seen so many doctors over the last 30 years that have what I call the blank face syndrome and I would not want to be paying for that.

You seem to be very knowledgeable about this whole subject and I would appreciate any advice that you could give me regarding the UCH and physio etc.

Thanks

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Alaine1
Alaine1Administrator
in reply to Buuldog

Hi Buuldog,

I myself had a one off disastrous pain appt at UCH in 2014 before pain management at my hospital where I’m treated by a various specialists besides the endometriosis and urologist specialties. Others have only positive stories so for me I think I’m a Barts health patient through and through as I’m used to the way they work, feel listened to and have equal import into my care which is so important in any chronic illness.

I’ve just looked on their website including the physiotherapy page and nothing is mentioned. However I do remember women’s health physiotherapy being mentioned to me at my pain appt there so I would imagine they also offer it to men as well. The only thing worth considering is that they are only likely to have one possibly two physiotherapists working directly with the pain clinic so the waiting times could be long. I probably wouldn’t pay privately to have an MRI scan and consider using this money to perhaps get ahead start on physiotherapy privately. I went to Sixphysio in London who have various branches in London and they also treat men. I found them to be extremely thorough and will keep your GP or medical team updated if needed. They are used to people seeing them whilst they wait for their nhs physiotherapy appt so don’t worry about that. My initial appt with them was more expensive but was approximately 1.5 hours and covered an examination and some work done that day. Women’s/men’s health physiotherapy on the nhs is very hit and miss. I later had a one off nhs appt at another nhs trust not uclh or Bartshealth ( I cancelled the rest) as the physiotherapist didn’t listen to me, my concerns or include me in my treatment plan. I also didn’t find them very knowledgeable. I hope this helps but if not please get back to me and I will reply later as I’m due to start work until 9pm tonight

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Shellybelly5

I had both hands-on and take home exercises. We did bio-feedback and a female dilators. I’m in the US, so I am not sure if Kratom is legal in the U.K. I order from topextracts.com, very reputable. The physical therapist also helped stretch out the scar tissue around my navel and other incisions.

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Skye22

I feel your pain!!!! I have suffered with pain also more than 30yrs. Like you many appointments, many different doctors and it's true what you say ,the wait for appointments, scans/tests, results then try another medication. I have had 13 ops with docs saying "you're just unlucky"!!! Then my luck changed (30yrs on) when referred to my specialist physio. She new right away what was contributing to my pain, arranged appointments with consultants and finally (female docs) actually listened!! Unfortunately for me i have been left with terrible adhesions with all the ops that were supposed to help take pain away. I also am getting further complications with severe muscle spasms with levator ani syndrome and dysfunctional bowel. I now cannot have any more surgery because of internal damage and it would be too risky. Ok I got my final diagnosis, got doctors who have arranged a care plan and new meds , also trigger point physio and God awful painful injections. I was right where you are now no hope and endless pain . With a lot of support from family and friends and with meds/treatments and my two consultants actually working together (so now I don't have to wait for different apointments) I try to remain positive but it is bloody hard work!! I waited so long for my diagnosis that I feel like so what I'm still going to have a life of pain!! HOWEVER I refuse my ill health to define who I am !! I will try and look for the positives in life and on my rare good days celebrate by doing something fun!! I sooo hope you can find the strength to keep pestering your docs and start demanding that diagnosis and treatment that you are entitled to!!! We have waited long enough!!! Apologies for the long post and I really do feel your pain!! Ever you want a chat I'm a good listener!

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Alaine1
Alaine1Administrator
in reply to Skye22

I’m a big advocate of physiotherapy- the branch is commonly referred to a women’s health or men’s health physiotherapy. I had problems getting to see one on the nhs so went private but helped enormously. The pelvic floor or pelvic floor dysfunction is under diagnosed in those with known causes of pelvic pain such as endometriosis, interstitial cystitis etc but also those without a known diagnosis such as chronic pelvic pain syndrome where in many cases the cause is simply an overly tight pelvic floor. Although in my case my right side was extremely tight but the left side showed some weakness but it still helped improve the pain from the conditions.

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Skye22
Skye22
in reply to Alaine1

I was very lucky to get my physio on NHS I've been seeing her for about 4yrs and it definately helps. After my trigger point therapy I get a definite reduction in spasms and pain but unfortunately it is short lasting. It seems ridiculous with advancements in medicine and treatment women are being denied treatment due to shortage of professionals and budget cuts!!

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Alaine1
Alaine1Administrator
in reply to Skye22

It’s not the NHS doing this to be unkind but more often than not a team of 2-4 women’s health physiotherapists will have to look after gynae patients, those from obstetrics and do antenatal classes. If they could employ more they would. Plus not all women’s physiotherapists are trained to do trigger point release. It’s not required to practice as one and is an additional postgraduate course. So if anyone is seeking either an NHS women’s health physiotherapist please ask the referring doctor to write that trigger point release is required. With private you can self refer but either ask at time of booking or if they have a description of their skills on their own or clinic website take a look.

It’s not just women, it’s affecting males and children and across all illnesses and specialities. Something has to give if the government doesn’t help with escalating medical costs from new drugs especially cancer drugs which can often cost £100,000+ per year for one patient! Another ‘burden’ is rising age where it’s the norm to live to over 80 years of age thanks to modern medicine. I for one don’t think we should restrict their care either but many have to sell their homes to pay for care if they can’t cope due to arthritis, failing eyesight etc. One way to fund the NHS property it is to tax the rich but it’s not popular with any political party or to add an additional tax we pay through deductions from our wages. As well as ‘working’ on here when not working in my paid job I also represent the charity at parliamentary events both here and in Europe, in research projects. I also advocate for myself and females with the RCOG women’s voices group, public health England reproductive group and Katie’s Team which is Barts health women’s research group. Even though the last 3 are female oriented I do look to see if it will help male patients. There is so much research going on even though it doesn’t always feel like it or you don’t see it in the news. Research is now under threat in the U.K. due to Brexit as many of the grants come via Europe. As a charity (and I didn’t mean to turn this post political) our stance is clear - any form of Brexit is bad for patients, for the NHS, for research and has far reaching consequences. Both myself, Judy and her husband have marched in London as well as lobbying our MPs. Despite this we are here to support you and will continue to do so

I feel each and everyone’s despair as I’ve been there myself with pelvic pain and to an extent still am. Plus with the other chronic health conditions it can feel overwhelming at times especially after a hard day at work struggling on London’s underground during rush hour.

Keep on posting everyone as we are here to support each other no matter if we have diagnosed or undiagnosed pelvic pain

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willemine

Hi Buuldog , I can relay to your struggle i also have that pain and i lost my work and hobbys . I been true a acceptance fase and intergrate my dissability in my life but still its very hard and sometimes not manageable but desparate .can t sit after a operation from a frozen pelvic because of endometriosis and my pain is also centerd around the tail bone. I sit on a yoga bench with a swimmingboard on top of it with a whole in it to not get weight on my tailbone and i transport myself on a step / scooter.

Take good selfcare and wish you much low pain days ahead of you.

Greetings from Willemien

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willemine

Ps i also took gabapentine but it didn t help now i have amitriptaline with oxycodon it helpes a bit

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Playful1

Therewas progeamme on yesterday on bbc cannabis:miracle cure or dangerous drug. It was really interesying to know the cannabis really does work on pain and gives people their lives back but it needs to be a ceryain concentration/percentage. The nhs can prescribe it to you seeing as you have a lot of pain for soo long. Check on the internet the boy who had hundreds of seizures afau they went abroad to europe amd treated their son with cbd and thc and hes a completwly different boy with no seizures. Israel has studied camnanis for over 50 years and drs there prescribe it to theor patients for pain with excellent results and no side effects :)

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