don’t know what to do about pain - Endometriosis UK

Endometriosis UK

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don’t know what to do about pain

avavs777 profile image

hi everyone,

i’ve been discharged from my gynae and urologist and i just don’t know what to do with myself now. everyday i have some sort of pelvic pain but there’s no more they can do for me seeing as they barely found anything wrong with me in the first place (just flimsy adhesions, i have no idea how i got them but they were split during a lap). i’ve just had my first appointment with a new urologist (i have an overactive bladder) and she’s prescribed a new medication which i’ve been taking but it’s doing nothing and i just feel so hopeless. i also recently saw an orthopaedic surgeon as i’ve been having bad back pain, he sent me for a scan which has shown that i have mild scoliosis that doesn’t need any treatment. i’m grateful that there’s nothing really wrong with me but i’m just so fed up with the suffering and feeling like i’m wasting everyone’s time and money. it’s been a year and a half since everything with my health went wrong all of a sudden (if only i knew why!). every single day i wake up and my stomach hurts, my back hurts, i need to pee every five minutes, i have constantly changing bowel habits and then i get a horrible migraine every afternoon just to top it all off. i don’t know where to go or what to even do. my bedroom looks like a pharmacy yet i haven’t even got a proper diagnosis.

i really need some advice or even just some kind words, anything is appreciated at this point!

19 Replies

Sending you a hug 🤗 I became ill all of a sudden too and life has never been the same since. To be in pain every day isn’t right, can you push the GP for a referral back to gynaecology and ask for more tests to be done.

Have you had an MRI?

I have endo and adeno (adeno diagnosed via MRI). You have the same symptoms as me apart from the migraines.

If you feel something isn’t right, you usually are right as you know when something is wrong within our own bodies x

thank you so much for your kind words! i had an mri last august as well as multiple ultrasounds and nothing showed up which is why i had a laparoscopy x

Hi Avavs,

I'm sorry to hear you are suffering.

Please try not to fall into the trap of ever using 'just' about your health or what you are going through. It isn't 'just'. Otherwise you wouldn't be so impacted by it. A few things to consider if you were checked for endo ect along the way, if you were not seen by an endo specialist they can miss growths and it happens all the time. Second, the number or stage doesn't necessarily define your suffering or pain. Someone with a lower stage can experience more pain that someone at a higher stage.

If you are in pain don't sit with it. Tell your GP. Ask what can be done from medication, a pain clinic, physio, needles, acupuncture, massage, anything and everything is worth trying if it might ease your pain.

Non medical things that might help:

- Tens machine. Lloyds do a four pad one I've found reliable and long lasting. The replacement pads can be bought in line in bulk much cheaper. It has different vibration programs and intensity levels and can be used with two or four pads depending on what you need at the time.

- Heat. There is a clear divide on preference here and I think it really comes down to the person and what works for you. Electric heat pads, hit water bottles, microwave heat bags (there.are.fdifferent shapes, sizes, fillings and availability of scents if you like but be careful with pets as some can contain essential oils which can be deadly to some animals). My preference are unscented flaxseed microwave heat bags I buy from a seller on Etsy. I have a different shapes and sizes and they've custom requested slip covers I can change and throw in the wash. Some products can be worn around the waist or tied to belt loops but keep in mind the weight of the item and if this might cause further harm over time for you. There are stick on disposal heat patches in a pinch for an 'invisible' on the go option. Read the instructions as some can be applied to the skin (irritation/reaction is still a possibility) and others need to go on the inside of clothing.

- Cold. Some find cold helps more. Some microwave bags are also suitable for freezing or you can get reusable ice cubes or a freezer specific product for this use. In a pinch a cheap, clearly labelled bag of frozen peas works great and can be used more than once, but don't eat them afterwards!!

- Yoga, mild stretching and self massage help some. Listen to your body, don't force it and ease in. Less can be more. There are lots of free videos online that can offer suggestions in all three and lots of variations that can be customised to your needs.

- favourite playlists can be a source of comfort whether it is favourite feel good tunes you can belt out along with the music, something to help release anger and frustration, or soothing or sleep targeted. My husband says I sound like a tortured wilderbeast when I sing (he isn't wrong 🤣) and wonders why the neighbours haven't called some sort of wildlife rescue....

- The market has been flooded with apps for stress relief, mental health, sleep, ect. It is worth checking what works for you. I have been finding Calm works for me. I did a.trial of full features before buying the annual subscription which was less than £30. It has helped me sleep when I've been days into a sleepless flare. I use it pretty much every day. If not for flares then to help me falll asleep at night. It has breathing exercises, sleep stories, music, help dealing with pain, motivational talks/presentations and regularly new additions.

Others will have more options that might help. Everyone is individual. What works for one may or may not for the next. I hope something here helps in some way to make your days better for you,. And if not that you find what does.

I wish you luck and better days. Sending hugs.

avavs777 profile image
avavs777 in reply to Missy100

thank you so much. i will absolutely try out what you’ve suggested!!

Something is clearly wrong and if they can't find it, not your fault. I think you need to go back to the doctor and ask for further referral to gynaecology. It sounds very much like you could have endometriosis and it has been missed - it often is. Often only a specialist will spot it.

Sadly what's happened to you is really common.

I hope you can get back on track and get the proper help you need. xx

avavs777 profile image
avavs777 in reply to Dogmad6

thank you. i’m just so worn down and exhausted from years of waiting for people to listen and act- hopefully i will see a specialist at some point though.

Hi, sorry for your suffering I have been in pin for 12 years everyday now. I first was diagnosed with fibromyalgia. And the a condition called Elhers Dankis Syndrome (this diagnosis only 2 years ago). I had a Lap in 2019, despite them removing my right Fallopian tube I still have a diagnosis of probable ademyosis. I believe I have deep infiltrating endo that hasn’t yet been looked for. It is a fight to get my needs met. But they will listen if you fight. Make sure your Gynae is registered with the BSGE, and get a referral for a second opinion. Do your own research. There are a couple of American sites that have helped me Extrapelvic not rare and an FB group called Nancy’s Nook. Don’t give up! Be your own advocate. You know your body best. Here is the link to the BSGE. Good luck 💛

thank you so much for your support. it means a lot :)

Hi, it is horrible when you are at the point that everything hurts and you can't get any help. As others have said if you weren't seen at a specialist endo centre, then it may be worth asking for a referral to one.

It may be worth just trying lots of different things to see if you can find something that works for you and helps with the pain. We are all different, but I found that changing my diet made a difference to my symptoms, by reducing gluten, sugar and processed foods and having more anti-inflammatory foods like fruit and vegetables. Diet also made a difference to my bladder symptoms and I found that caffeine, alcohol or anything acidic like orange juice made it worse.

Homeopathy also helped my bladder symptoms and I know some people find acupuncture helps with pain.

I hope this gives you some hope that there are other things you can try to see if it helps you.

avavs777 profile image
avavs777 in reply to EmB18

thanks so much for the advice!

I’ll not comment on the endo issues as I have nothing to add to good advice here.

On bladder issues - ask about referral to a physio specialising in continence. In the meantime try pelvic floor exercises, you probably already do these but just thought I’d mention. They can give you that extra bit of time to hold on when you need to “go”.

The physio can advise you about bladder retraining as well where you learn to hold on for a bit longer each time ( in a safe environment of course).

As far as I know there are at least three drugs that can be used for overactive bladder to slow it down a bit so if one doesn’t work another might. Your GP can prescribe these so you shouldn’t have to wait for an OP appointment.

Re back pain, again a physio is your best bet to give you some strengthening exercises. If you can afford it you can see someone privately, even a few sessions will probably be beneficial. If you google a few locally you will get an idea of prices. You can of course ask for NHS physio but will probably have a wait. As you have scoliosis it will be a good idea to get specialist advice.

If the orthopaedic surgeon discharged you that is because you don’t need surgery. Very few people with back pain will benefit from surgery, but it doesn’t mean they don’t have a genuine problem.

I don’t see why you shouldn’t get pain meds from your GP for any or all these issues, which actually do enough to give you quality of life.

Lots of good advice in previous answers about non-medical things you can do too, I have ranted on a bit as I have the same issues apart from the migraine, thank goodness,

I hope you can find a way forward that works for you xx

avavs777 profile image
avavs777 in reply to Cailleach

thank you so much. my old urologist did give me a sheet with some exercises on- i forgot i had it so i’ll have to have a look!

Hello lovely, sorry to hear you’re having a hard time! I hope you get sorted soon! I also have scoliosis, at one stage my curvature starting to cause pressure and compress my spinal chord to the point it was affecting my bladder so maybe it’s worth checking with ortho that everything is okay there? When was your scan? Things can change so quickly. Hope this helps good luck with everything! 🦋 xx

hi there,

that’s actually what the specialist thought had happened- scans suggested that wasn’t the case. my last scan was about 2 months ago- i’m having another in a week though. thanks so much for your advice 💕

You’re so welcome! Sometimes you just get to the point where you want the scan to show SOMETHING up instead of the constant inconclusive results! 🙄 sending you lots of luck for your upcoming scan lovely! Take care xx

hi sweetie how's u doing? I'm sorry to hear that ur suffering 🙁 unfortunately I feel ur pain I've been passed from piller to post for the last 24yrs, I've been on every combination of pain relief you can imagine. I also believe that all the medication caused my immune system failed and I got sepsis n encephalitis 😔. In my own experience I've found that cannabis is the fastest n most effective pain killer (it doesn't cause me any side effects unlike the opiates), since using it I've cut out opiates 😊 I also use cbd oil instead of paracetamol, devil's claw ( a natural anti inflammatory) instead of Ibuprofen, unfortunately I'm still on some medications butrans patches 30mg/ph (I've reduced to 15mg/ph) and pregabalin 600mg (which il reduce when I've come off my patches). hot bath's and hot water bottles are also helpful, for some women (unfortunately not me, it caused painful spasms) a tens machine helps, I would suggest acupuncture that did help (covid has stopped that temp)

I really hope you find something that helps you, if you ever want to chat plz pm me xxxx

hi there,

thank you so much- im so sorry that happened to you! i’m definitely interested in trying cbd- it was actually recommended for my dog to treat his arthritis and it seemed to help so i’m going to try and get my hands on some. ive found that heat helps a bit (such a shame that’s not the case for you!!). likewise, if you ever need to talk i’m here x

Sorry to hear you are feeling this way. I too have had a dramatic sudden turn in my health which all started 20 months ago and its been a long and ongoing process, I too have been passed around various different departments and consultants. If you have a work health and wellbeing service I'd advise you speak to them. I have recieved female health physiotherapy through my employer or ask your GP for a referral. They can also refer you to the pain clinic, they can help you to find ways to manage your pain.

Lots of people find CBD oil really helpful, I'm not allowed to use it because of my work. I use heat, a weighted blanket which helps me sleep along with a body pillow which helps with my back and pelvic pain, i also use a tens machine and a mix of medications.

You know your body best and you are entitled to a second opinion, its so important to see a gynaecologist that specialises in endometriosis as less specialised consultants can miss it. Stay strong and try to remain positive, I know its hard. You will get answers, just try to look at it as every test is one step closer to the answer that holds the key to how to get yourself on the mend. In the meantime try to make the most of the times when you feel your best.

Hoep you start to feel better soon x

avavs777 profile image
avavs777 in reply to Bikergal900

thank you so much :)

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