So long to wait ☹️

[Littleone88]

Got to wait till October for ‘ a phone call’ appointment.

The pain ii feel is unbearable. It starts during ovulation and stays till period comes.

Ii get pains in my ovaries pelvic area, in my hip down my leg. In my leg ☹️ iv been waiting for ages already. And now to wait another 12 weeks ii feel devastated.

Suppose to be due a scan to check on my cysts in ovaries September so ii was told months ago and heard nothing on that either.

Any tips for relief? My cramps seem to be getting worse. Ii feel like the coil has done nothing but make it all worse ☹️

[Moon_maiden]

I’ll be amazed if they are just doing phone calls in October. I know the waiting lists are long though.

I went private last year, saved hassle, but does depend on pennies.

What does your GP say about the pain side, they can also arrange an ultrasound very easily, unlikely to show endo but can check for other things.

Also ask about cancellations at the hospital, these happen quite often. With people suddenly going away, you’d be surprised where priorities can be. It might mean phoning regularly.

[Littleone88 in reply to Moon_maiden]

Ii already no ii have chocolate cysts and a lot of them. One of them being very big and that was last year. Just fob me of with pain med and say wait for gyno to ring to discuss where to go next.

I’m going to ring Monday see if they can call any quicker I’ve been waiting for ages for this call.

[Moon_maiden in reply to Littleone88]

GP can send a message directly to the consultant, so they can ask for advice. Can take time though. The surgery were supposed to do a pain referral, on the advice of the pain nurse, but didn’t and did what they’ve done before and send a message.

Do check for cancellations with the hospital as well.

[Littleone88 in reply to Moon_maiden]

Yes I’m going to ring Monday first thing for cancellations, try my luck.

It only use to be painful around period time now it seems to be from ovulation till a few days into my period just getting longer and more painful.

[Moon_maiden in reply to Littleone88]

Let us know how you get on

[Littleone88 in reply to Moon_maiden]

I will thank you xx

[MrsMarlene]

I also have daily pain that shoots down my leg. Try some CBD oil, its made things much better for me.

[Littleone88 in reply to MrsMarlene]

Do you really ☹️ it’s horrible isn’t it. Ok where do u get the oil from?? Ii will definitely try it it’s worth a shot. Xx

[MrsMarlene in reply to Littleone88]

Yes, in January the pain in my leg was so bad I could barely walk. I'm still waiting for my first consultant appointment, and as I've had zero advice from my GP since she sent me for my scan and was told I have severe Endometriosis so have had no other option but to help myself through this while waiting. I started taking daily CBD oil from a company called Hempura, they deliver in descreet packaging and fast. Best to start off on the lowest dosage and build up as needed. For me it took about 2 weeks or so to start feeling less severe daily pain, and within a month I was able to walk normally again. Hempura also make a lovely CBD chocolate. Initially it relaxes you, but with more use I've found it so helpful. Hope it helps. Feel free to message me xx

[Littleone88 in reply to MrsMarlene]

Thank you so much will order some see if it helps.

It’s awful pain isn’t it. My leg get soooo painful during ovulation and stays till few days into my period 🥺

can’t believe this can cause such widespread pain for us. Ii love going on walks too and it’s something ii end up not being able to do for weeks. Thank u so much it’s nice to be able to talk to someone tht understands you xx

[MrsMarlene in reply to Littleone88]

Its a constant burning sensation that I'm so often struggling to describe to others, as if barbed wire has been wrapped around my veins and tightened. At its worst it can creep down from my pelvis down to my knee. I've also found YuYu hot water bottles are amazing as you can wrap the heat around. Once you start taking CBD oil you'll be able to work out how much you need after a couple of weeks to stop feeling such an intense pain. Hopefully, as I say its working wonders for me.

[Littleone88 in reply to MrsMarlene]

God yes ii find it impossible to tell someone how it feels. It goes from my pelvis and sometimes manages to reach to the back of my ankle. And yeah mine feels warm/burning. My leg feels tight/Numb.

Ii have one of them long things u put in the microwave for a couple of mins and wrap tht around my calve it usually helps.

Ii do feel for u it’s such a horrible feeling. Ii felt like i was going insane at first racking my brain on what could this pain possibly Be xx

[MrsMarlene in reply to Littleone88]

Same. I'm guessing its something to do with lesions compressing certain nerves but no idea until I hopefully speak to Endo consultant in October! I find the Refined CBD oil tastes nicest, and having the chocolates is good to carry in my purse in case I need a top up. Hope it helps xx

[Littleone88 in reply to MrsMarlene]

Iv got to wait till October too. Is urs a telephone appointment also?? Im gonna try ring them tomo see if thrrr is any chance can speak to them sooner. October seems so far away. I’m going to order some today give it a try thanks for the tip Xx

[Gingernut74]

Hi,

Do you have an actual date in October? I’ve just got a phone call after being referred only 3 weeks ago & was really surprised at how quick this has happened?, can you ask your doctors to request a more urgent appointment as they can do this, u unfortunately we have to really push & chase to get looked after - don’t feel you are being awkward it’s just what you need to do.

What type of painkillers are you on? As only really strong ones like tramadol/co-codomol & Orimorph help tAke the edge of it?.

Have you tried reflexology or reiki I found these both together done just before the painful times in your cycle really helped me, I’d highly recommend it 👍.

Hope you get some relief soon as it feels never ending, heat patches, hot baths, hotties etc - which you probably already do & walking believe it or not?.

[Littleone88 in reply to Gingernut74]

Hey. Yes ii do have an actual date for them to ring, it’s the 3rd ii believe. Could be wrong tho. I’m going to ring the actual number and see if they can do anything sooner cancellations or what not tomo.

It’s such a shame we have to fight for basic human care.

I’m taken the higher dose cocodamol atm. Ii do have orimorph but makes me feel sickkly,

Ok thank you will look into reflexology and reiki didn’t no either of those helped so will check it out.

Ii do the baths heat patches water bottles etc. Walking ii love to do but when it effects my hip/leg it feels worse 🙈 xx

[Gingernut74 in reply to Littleone88]

I know, I’m 46 have had a total abdominal hysterectomy 2 years ago, had a few great months after but then got pain back then had adhesions removed in January this year, again had a few pain free month but now got it back so I’m waiting to spk to consultant on Monday to find out where I go from here now??

Just so gutted it’s all back & what to do & how long do you have to live with this when everything has been removed, how to manage it? It’s affects so much of your life 😡😤

[Littleone88 in reply to Gingernut74]

It’s unbelievable isn’t it, ☹️ do u have pain around a certain time of the month or isit inconsistent?

I’m assuming it’s a lifetime thing if a hysterectomy didn’t work to help it.

Or maybe it’ll stop when menopause starts.

Did u keep ur Overies when u had ur hysterectomy or did u keep them to not go into menopause?

Ii feel a loss too. Ii thought the coil would help but it seems the year it’s been there it’s caused far to many more problems slowly but surely. The burning pelvic area and into my leg is what bothers me the most ☹️ it lasts a few weeks. Them few weeks are miserable which consists of baths tablets and moaning lol Xx

[Gingernut74 in reply to Littleone88]

No I had everything removed as felt the ovaries cud be the biggest culprit & thought whip the whole lot out as I can’t bear to go through anymore plus cancer risks too, I have pain twice a mo they based around ovulation which is the worst lasting up to 10 days & when I’d have a period - but why wud I still get this this when everything Gynae has been removed?, I know your brain & organs still produce oestrogen but A small amount but why is the pain still in the areas I had it, mainly back top of legs, bum etc & after hysterectomy I’ve been left with nerve damage all in the crease of top of leg/groin which is exasperated around those 2 episodes of pain too, but tomorrow I’m having a nerve blocker but need to pin point where it is to try & get right nerve 🤷‍♀️🤦‍♀️😂.

Am now thinking of trying cannabis to stop using so much prescription drugs, I’ve read a few articles that this is not only supposed to help the pain but help reduce symptoms & help you have better & undisturbed sleep which helps with with the chronic fatigue.

I suppose I’m lucky in one aspect that although I get cramps & always have down to my knees with the pain have never had it bad like you - can’t believe went to doctors at the age of 15 over 30 years ago & not once was this ever picked up - just painful periods 😤😡🤬.

[MrsMarlene in reply to Gingernut74]

Try CBD oil first as it doesnt contain THC. I dont use any painkillers unless I'm having a bad flare up of pain, but find daily CBD oil has taken the edge off my symtoms.

[Gingernut74 in reply to MrsMarlene]

Thx, do u take it daily as you have pain daily or just it keeps it at more on the times you do get it? 👍

[Gingernut74 in reply to MrsMarlene]

Sorry just read your earlier post, u do some pain daily, I tend to get mine twice monthly so I guess just take it on these days? Have u tried it in vape form at all?

The chocs def sounds like a good idea & like u say keep a few in bag when necessary 👍

[MrsMarlene in reply to Gingernut74]

Its best to try it out and see what works for you. I have daily pain, but worst during week after period. I take 10mg CBD oil daily and top up depending on pain level throughout day. I recommend taking a small dose daily to see if it helps your symptoms and hope your pain isn't as bad on your bad days. Do some research on CBD oil and the effects xx

[Gingernut74 in reply to MrsMarlene]

Will do - thank u xx

[Missy100]

I use my microwave heat bags a lot and they do help some. I prefer the linseed ones as they are most comfortable and hold the heat well. I get mine via Etsy.

You might find a tens machine could possible help some. The one I use to use was from Llyods pharmacy and was quite inexpensive. If you find it helps, I found that buying replacement pads on line, in bulk, was the cheapest option.

I would also recommended contacting your GP to see if they can prescribe any prescription pain relief as well. All of the prescription medication I take has all been prescribed by my GP rather than the Gynaecologist I am with.

I hope you find a solution that works best for you.

Good luck 🍀

[Anastasia17]

I second itsgabby. I too am on an exclusion anti inflammatory diet free from : gluten, dairy, soya, chocolate, caffeine, apples, brown rice, tomato purée since May 2019. It has reduced my pain, inflammation, bloating. I also do yoga online and I find it helps relaxing the muscles, joints and makes me feel better. I also took CBD oil last year when suffering from acute pain and anxiety and depression and it really helped me. Lady physio can also help.

There are different tools to use in the toolbox. I hope you find what works for you. x