24 hour torturous pain unable to do anything

[Wewillgetbetter]

I’m losing hope here. I hope there is some advice any of you can give me, I would greatly appreciate it. I have swelling in the private area on the left, soft tissue lumps inside of the vaginal tissue, and in the abdominal tissue - doctors are not believing me because it doesn’t show on the mri. My pelvis is very hard it feels like a rock, I can’t sit down or close my legs because i can feel hardness. I also can feel my lymph nodes blocked and exhausted as a result. The swelling won’t go down a nd I have nerve irritation as a result - I can’t breathe literally. I can’t handle it, I really can’t handle it. I’ve been in pain 24/7 for 4 years. Is there no way out? I’m also in my early 20s and I can’t focus on anything in my life. My quality of life is 0 as I can’t find any position or any moment without agony. Any advise ? I’ve changed my diet as I am so depressed, the lumps have been spreading for four years and no one has biopsied or anything. I lost my job as a result and can’t afford private care... no one will help me, all they keep doing is giving me painkillers

[kalecolbe12]

Have you been to see a pelvic floor physical therapist ?personally I think that's your first place for an assessment

[Wewillgetbetter in reply to kalecolbe12]

Hi kalecolbe, I’ve never heard of such thing but I’m googling it now. Any reccomendations? I’m in London? Also, will they help even if there are lumps?

I did forget to mention but I’ve seen about 8 gynaecologists so far and none have taken me seriously

[kalecolbe12 in reply to Wewillgetbetter]

yes I believe is there a hospital st. Mary's in London I think I've seen people on the site say they went to st. Mary's but just Google pelvic floor physical therapy in your area...but also go to Facebook site pelvic floor dysfunction and join and they will help you too because I'm in America but I am from England I do know there's definitely some pelvic floor physical therapist in London on the NHS too

[Hidden in reply to Wewillgetbetter]

You can ask your GP for a referral to an NHS women's health physiotherapist, but Google first to make sure they do pelvic floor therapy, as not all do this. I saw a physiotherapist at the UCLH near Warren Street tube station. In my case for hypertonic pelvic floor muscles. Not sure if they will be able to help, but worth a try. Good luck.

[kalecolbe12 in reply to Wewillgetbetter]

I wanted to add the lumps could well be trigger points that the pelvic floor therapist will be able to work out.. trust me on this... this is your best option for a first assessment and she will guide you as to what to do

[Joann062862v]

I'm having a problem similar to yours.But I feel a big ball in my private place.Its affecting my walking .I'm taking Naproxen for inflamation.It helps at times.

[Wewillgetbetter in reply to Joann062862v]

With regards to inflammation, and this is to all of you if you have some kind of inflammation going on, I have found Curcumin to be extremely helpful. Pain made me feel weak all over and have inflammation in all my joints, curcumin at least takes an edge off of all over body pain and reduces inflammation. I hope you find healing soon <3

[Greenfairygirl]

I know exactly what you are talking about and it is always with me. I started to take wheat grass and it greatly reduced my fibroids and helps me keep the pain in check. I also use cbd oil to help with the inflammation. I hope you can get some relief. I also heard pelvic floor exercises can really help too.

[Wewillgetbetter in reply to Greenfairygirl]

I really appreciate you sharing a remedy which has helped you. I am looking in to the Wheatgrass and I am grateful you suggested it. I pray we both find healing soon <3 I always believed that if things can grow bigger, they can also shrink, and if they can shrink, they can also vanish.

[Pelvic18]

Wewillgetbetter

If its a compressed nerve physio may or may not aggrivate an already angry nerve. I would look into drs who work on nerves like a neurosurgeon. Also, after my hysterectomy hurt me and cut off circulation to my left ovary and it was attaching to other organs for a life source i developed necrosis and a 10 cm hemmoragic cyst where my ovary was supposed to be instead it was attached to my colon, then my bladder. My dr had no clue what happened in the surgery. Useless!!

I saw ao many drs im still in very bad chronic pain and will b cuz of compressed my nerves during my hysterectomy . My neuro surgeon did help as im no longer on My floor but the pain still unbearable im may be looking at another surgery.But first he is trying meds to try and calm the nerve Anyway thirdly a colorectal dr can examine your pelvic floor through examination going through your rectum without agitating nerves. I did it with a colorectal dr cuz i was afraid of aggravating anything more. outside of delivering babies OBGYN’s are useless. He let me know that I absolutely in no terns had pelvic floor and obgyns were wrong in my case now all cases are unique and differ so im trying to offer u other avenues. For me pelvic floor hurt me by triggering pain in a trapped nerve.

A lump is nothing to be ignored by drs. My advice to you in order is:

1) obgyn oncology ( they more then just handle cancer and they know the pelvic structures better,) Mine was from of City of hope cancer center he also saved me by removing my left ovary which was looking for blood to stay alive live Dracula. I owe to this dr Who went in when other Ob’s were afraid.

2) colorectal specialist ( they can diagnose pelvic floor without agitating it) through your rectum its amazing and so much less uncomfortable then a ob doing a pelvic then move onto physio based on their advise but make sure they know how to examine.

3) nuero surgeon who specialize in nerves. Dr Arron Filler in Santa Monica California ( look up nerve med) he is cutting edge on the piriformis) does travel abroad he saved me so much i couldn't eat i was burning, numbing and tingling up my sternum Into my face from my pelvic surgery into my abdomen post hysterectomy. unfortunately there are hundreds of nerves there so it may take more surgery, to get out of pain. Google nerve med santa monica.

Also please google the HERS foundation and write and call its free support they pointed me in the correct direction and it changed my life.

You can PM me as well. I will follow you on here cuz I know pain16 months of a living hell Post hysterectomy getting drs to listen and believe is hard enough But b your own advocate you know your body and push and push til someone listens. You keep going someone will hear you.

Best to you!

[Wewillgetbetter in reply to Pelvic18]

Hi sis, thank you so much for your advice. There is a lot of information to take in and I am grateful for the time you have taken to give me advice - you're not even a doctor and your willing to help more than them!!! I pray we both find healing. I have emailed the HER foundation and I will let you know if they point me in any positive direction.

[Pelvic18 in reply to Wewillgetbetter]

Of course! Be loud but sweet and push you need a diagnosis not ok! Call HERS of you dont get email try again so worth it. Also call [phone]. She councils thousands of woman world wide so Keep trying with HERS and drs too be kind with drs but push, push and push!

Click in the menu in hers called” in her own words listen to women on there u arent alone. Im on there. I will update once i am more pain free! Im grateful for small victories! Im in a total different place then a year or even 6 months still a long way to go but i keep going and wont stop til someone corrects the remainder of my pain.

Best to you... keep me posted!

[Skye22]

Has any medical practitioner been able to feel the lumps?

You have a right to be listened to and access to medical care and treatment. Suggest you see your Gp, and ask to be referred to relevant doctors for examinations and relevant tests.

You are far too young to be in this amount of pain, any lumps should not be ignored. Hope you can find the help for a definitive diagnosis and treatment plan.

[Wewillgetbetter in reply to Skye22]

Some are very deep but provide me with a hard pelvis so I know there is some sort of fluid build up and tension within the tissues. I have seen so many practitioners and have had mixed responses to the lumps - some can feel some make no comment and some have said my lymph nodes are hard - they are very deep lumps. Thank you for your kind words <3

[willemine]

Ho see another doctor if its unbareable keep trying maybe it are cyst how are pressing on some nerves or you have pudendal neuralgie. Keep surching for a doctor how is specialised in the pelvic. In the mean while strength to carty your burden

Greetings from Holland

[Wewillgetbetter in reply to willemine]

I feel that it is some sort of growth pressing on the nerves and causing a deep imbalance in my body. Thank you for your words of encouragement <3

[MEHWI123]

Hi

I have suffered from pelvic pain with vulva burning and sharp electric shock line pains.

maybe there may be some differences in the presentation, however I read that the doctors have said you should not be getting intense pain from the condition/cysts you have

sometimes, when you can't find a physical reason, you need to look into other options. Mindfulness has been proven as an incredibly effective way to manage and even completely get rid of pain. The book mindfulness for health has been given BMA awards and recommended by doctors in private practices in London.

I really hope that you can order this book as it really helps to improve your quality of life and pain

amazon.co.uk/Mindfulness-He...

I missed out the yoga section but saw improvements without even reading that. I read a couple chapters and did the mindfulness exercises (guided meditations)

I wish you all the best

[Wewillgetbetter in reply to MEHWI123]

Thank you Mehw123 for your suggestion. I am sorry to hear of your suffering and hope that it is relieved soon.

[Alaine1 Administrator]

Hi,

Just a note you can only be referred to woman’s health physios that your local CCG has contracts with. You can’t choose like you can for consultant care. So if your GP in London has a contract with St George’s, Royal Free, UCLH, St Thomas’ you can’t get a referral to St Mary’s. this is due to the way physiotherapy services are commissioned and paid for. I found this out myself when I needed a referral to one and as I didn’t want to be seen locally as my local trust had missed a lot of medical conditions and my care for all my conditions is in London I decided to go private. The benefit of going privately is that you can choose the physiotherapist and clinic, can change if you don’t feel you get on for whatever reason including she doesn’t understand your current condition etc, you can be seen quicker. In Central London where I went it is a lot more expensive than outside London but worth keeping in mind.

I’m not convinced you have lumps as such so there would be nothing to biopsy. But I do believe that you have swelling going on. Lumps do show up clearly on MRIs so it would be a surprise if anything had been missed. This includes lymph nodes. I’ve had swollen lymph nodes scanned and biopsied when I had a breast lump. Swollen lymph nodes without infection come under the remit of a 2 week wait referral for suspected cancer. What I think you are most likely feeling is tight knots in the muscle fascia. These can feel like lymph nodes to non medical people and are often overlooked as a source of pelvic pain. A physiotherapist can easily spot these knots and they are used to seeing this as a source of pelvic pain in its own or as part of a gynaecological condition such as endometriosis. These tight knots can result in a tight feeling in the pelvis. I don’t feel it’s a good idea to keep on prodding the abdomen or looking at the vulva etc as that will add to your anxiety which is understandable. Even a bacterial infection such as a UTI can result in this type of pain.

A blood test would have picked up any type of infection that would account for your symptoms and the MRI would have identified any worrying feature in the lymph nodes.

With the vaginal swelling I’m wondering if you have a localised condition such as bacterial vaginosis, or thrush. Both of these conditions are often overlooked by medical professionals especially if the patient doesn’t present with typical symptoms. Another reason could be irritation which could come from hygiene products, shower gel, washing liquid used for clothes. Generally bubble bath, bath bombs shouldn’t be used in baths as they are known to cause irritation in the vulva. This goes for natural products. If I get any for gifts I use them as a foot treat when on the rare occasion I paint my toe nails. For the same reason don’t use laundry conditioner on your underwear as it will irritate the vulva.

Besides seeing a physiotherapist I also recommend attending a sexual health clinic. These don’t need a referral and you can often attend the same day but you may be asked to come back for tests or swab results. I believe these clinics are often overlooked by patients as if they aren’t sexually active they think it’s not for them and those who are feel they maybe overlooked. I’ve been to one when I was asked trial the arm implant for endometriosis and adenomyosis. It didn’t work unfortunately. But I’ve had a very positive experience there. There is no judgment by the doctors and other specialists there and they are as well qualified as gynaecologists and very often spot dermatological conditions affecting the vulva that GPS often miss as they don’t see it that often. So it may turn out you have one of these. They can prescribe any treatment you need and if you do need to see a gynaecologist they can often do the referral but not always as it depends on local guidelines. What you should expect although you might not have all of these is an examination both of the abdomen, vaginal and the skin of the vulva, cervical examination which may or may not include swabs, symptoms- increased urination, pain on urination, pain worse at night, what makes it worse - be specific etc They may also ask about your mental health. This isn’t saying your problem is psychological but it’s known that any chronic condition has psychological symptoms either due to pain, lack of sleep. They might suggest a course of antidepressants. Some of these also have a role in pain management so please don’t exclude them unnecessary. If it’s an unusual condition it might also be cured with the correct treatment. If you do decide to visit a sexual health clinic please ring first as they may do a telephone triage first due to the pandemic and also treat different age groups on certain days or have a limited capacity.

With pelvic pain there is a group of patients that experience pain of this type where no cause can be found so receive a diagnosis of chronic pelvic pain. This is an actual validated diagnosis and not simply the specialists not doing their job properly. Yes there are some that have had a diagnosis missed I acknowledge but this diagnosis still has treatment options including pain management which maybe through medications including topical, physio etc. So please don’t be disheartened if this is a diagnosis you receive or anyone try to invalidate it.

Other things you can do during the lockdown and beyond:

Taking a walk each day. This is important not only for good mental health but it provides a brief distraction from the pain. I understand it’s difficult as I’ve had pain on walking not only due to the two above conditions but also arthritis but I’ve done it as it’s provides a lot of health benefits overall. It’s one thing I’m missing at the moment due to shielding but I talk a walk around my garden.

Exercise- this doesn’t have to be strenuous but can include your walk which could be broken up into two daily sessions of 15 minutes or you could do so gentle stretching.

Looking at your diet - is there anything that makes it worse? It’s not always the case

Hobbies? Many of us forget about our hobbies once we go to work but they provide a welcome distraction. During the lockdown I’ve been brushing up on my language skills. Something I haven’t done since secondary school! You might find some new ones.

Mindfulness- there are a lot of apps for this but my two favourite are Headspace and Calm. Even 10 minutes shows health benefits including for pain. There are even bedtime story telling on the Headspace app. Some I’ve fallen asleep before the end which is brilliant considering I’ve had insomnia since the age of 16 and which chronic health has a big impact on.

Gratitude journal- I’ve kept one of these for the past 8 years. It’s simple really you can either have a note book or write it in your diary 3-5 points which you are grateful for that day. It can include things such as a surprise phone call, eating your favourite dinner etc, having clean bedding. Things we often overlook.

Practicing self care - giving yourself a mini facial or wearing your favourite jewellery. This has been big for me during shielding to keep to a routine of getting dressed and put some male up on each day etc.

Cooking - cupcakes? Doesn’t have to be fancy. I was cooking gluten free scones. They didn’t turn out that well which was disheartening but it’s a learning curve. The last time I cooked these was during cooking classes at school.

You may find that you are offered CBT or talking therapies. Please don’t discount this as this is increasingly be offered to those with chronic health conditions to help manage anxiety, depression or simply to help manage pain and the difficulties that arise with a chronic condition.

Others?

I hope this helps and I’ve managed to provide some ideas and hope for you. You are not alone. Please let us know how you get on. Take care and enjoy the bank holiday weekend

[Wewillgetbetter in reply to Alaine1]

Thank you Alaine1.

[mollypopple]

Oh you poor thing. Don’t give up hope, pelvic floor therapist as already said by others is good Advice. Try to stay positive, also research pain management groups, they do help but you must have belief.

[Wewillgetbetter in reply to mollypopple]

Thank you Molly Popple for your kind words<3