Endometriosis pain relief advise wanted; ... - Endometriosis UK

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Endometriosis pain relief advise wanted; prescriptive and non.

emmalouise1995
emmalouise1995

Hello lovely ladies,

The past 24 hours have been the worst of my life. With a 7 day late period finally arriving, I have never, ever experienced pain in my life like it. I was hunched on all fours on the bathroom floor, weeping and vomiting from the pain. I had already taken mefenamic acid , and also paracetamol with for the pains. They weren’t even touching it.

(I am due to meet a gynaecologist in May and I’m on the urgent waiting list for a diagnostic laparoscopy; Drs are pretty convinced this is endometriosis.)

I rang the oncall Dr at my GP for advise/further pain management before I made an appearance at A&E because I couldn’t cope any longer. I sobbed the whole phone call, it was so horrendous, she prescribed me some codeine and then some stomach protection and laxatives go help with the effects. If symptoms are to worsen, I’ll have to attend A&E. I’ve had 2 hot water bottles stuck to my front and back all day, I tried to go for a small walk and I literally cried the whole way to the end of the path and had to go straight back to bed .

What all do you find helps? Anything, absolutely anything would be useful. Im willing to try all the weird and wonderful remedies.

This is so debilitating and mentally draining. I’m exhausted. Big hugs to everyone going through this , it’s just awful.

X

25 Replies
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Hello!

I feel your pain!

Sat up in bed sobbing as we speak !!

Your doing all the right things painkillers , hot water bottle , curling up in a ball! I also try to drink warm drinks , especially peppermint tea! It's great for bloating and gas pains (which I'm guessing are accompanying your pains) and also it may sound strange but just moving your hips side to side or shaking to create a vibrating motion helps a little !

Hope your feeling better soon

Here's to being the unlucky ones,!

X

I’m much, much better now but I’m all drowsy and the codeine has really taken full effect (I’m probably a little too drugged up lol) , which I’m so thankful for but it’s literally impossible to do anything but rest. You poor thing, the rocking idea actually really helps! Must try the peppermint tea also. It’s so cruel..

I hope you feel better soon, many thanks for the reply xx

Oww I'm so sorry you are having such a rotten time.

I was like this every period last year, fight for something stronger than codiene! I have morphine for my periods now!

I hope a&e can help, I would go straight there to get this controlled. No one should be in this much pain, I'm sending you big hugs. I hope you feel better soon xx

the codeine kicked in and worked thank god I’m just super drowsy now but I’m so, so thankful that it relieved me, I slept like a baby once it kicked in! I was so desperate and I really didn’t want to be in a waiting room in A&E because I was so restless and crouching and kneeling where the only good positions🤞🏼Feeling better now! Thanks for the reply hannah , hope you are well x

You poor thing. I am so sorry, I feel for you. I habe been through, as recent with the vomiting part in Sept and today without the vomiting but the on the floor, scared, kicking, crying etc just this afternoon (I'm in pelvic pt, so doing trigger point work). Valium is the only thing to get a handle on it, even moreso than oxycodone (aka percocet). Believe it or not, asparin also helps. I'm in the US I know you all have less strong pain meds, I believe. To get what you need you have to fight! Sadly.

The warm drinks and peppermint tea I think is a good suggestion. The lady two posts I pretty much went over what I do. If it's possible you feel like there is a colon/small intestine aspect try a low residue, liquid diet. Quieting the bowels can help endo pain. Think non gassy soups, not too grainy bread. Yogurt. Apple sauce, mashed potatoes, simple, easy to digest foods. Giving your digestion a break helps you body spend the enervy where you need it most.

XO,

OG

Aspirin seems to work well with a lot a of ladies, I think I’ll be adding it to the list. The bowel idea seems great too, the bowel definitely adds to it too, further contributing to the lower back pain noticed. I’ll definitely be giving them all a try. I had ‘bad symptoms’ for years but it was never to the point of yesterday, I was Honestly thinking something else was so wrong . I felt like my uterus was going to prolapse honestly...

Thank you so much for the really helpful reply, I hope you are well x

" I had ‘bad symptoms’ for years but it was never to the point of yesterday, I was Honestly thinking something else was so wrong"

Have you had a recent ultrasound to see if you have an ovarian cyst? I had a stubborn one, and the bleeding while going up and down in size and while it was resolving created some frightening episodes, taking me to the ER (besides the severe kicking and screaming pain vomitting even sips of water).

What kind of imaging have you had done in the past year or so?

I had an internal scan done in July 2017 that showed my right ovary is positionally bending behind my uterus and I’ve a fully tilted pelvis. I had tenderness in the pouch of Douglas , and the whole examination was very uncomfortable for me . I had an abdominal ultrasound in late 2014 that showed small cysts that was suggestive of mild PCOS. I most definitely could do with another ultrasound, I’ll be mentioning to the consultant in May. Xx

Well it sounds like another u/s wouldn't hurt. I feel any help you can offer the surgeons the better off you are. I just posted under the title "bottoms up" about pre-post op suggestions. I use these in my daily managing of my issues. Perhaps you haven't tried some of them and they could help? I'd hate to hear your holiday was ruined by all this. Hugs, OG

That’s it, the more evidence the better. I’ll take a little look now, thanks so much for all your help. I honestly would be lost without all this advise , it’s great to have a community to reach out to x

Girl I have way too many years experience with all of this (I am 38, it started in a bad way when I was 23/24) so I like to share my tips and don'ts. I have been seen by 25-30 Obgyns over this time period between ER visits and my assigned ones. Here in the US insurance policies can change even annually, so we can loose our usual doctors, if the provider no longer stays in our county or premiums increase where we can't afford it. Currently I pay $250/month w/o copays (GP $10, MRI $100, hospital stay $350/day) and I'm just on an HMO (our PPO is like your private).

The #1 thing I have learned is you must be your own strong advocate. We have to channel the frustration of our situation and the pain into becoming our own attorney with well organized evidence, research and resources to expose our case for proper care. I have one specific notebook I use for my appts, all my problems, for the past 8 years. Makes it easy for me to flip to a page where Dr X suggested this, we tried it and this or that happened. Or to easily find a date when a certain procedure or medication was used and what my reactions were. With such little time in a doctors visit you need to respond like you're playing speed chess, hahaha. I also bring a printout or two, a respected, upstanding university hospital or journal, as a source to my question or what I know will be my alternative or less common opinion which will potentially conflict with the doctors traditional, unprogressive response.

So many of us are fighting for our lives here. We're in a time where Endometriosis and other pelvic problems (adhesions, pcos, fibroids and more) do not receive nearly enough research funding vs other epidemics (yes it is an epidemic when 1/10 women has it!!!) thus we have to work even harder to find answers and care.

Big Hugs!

OG

First of , I think I need to thank you on behalf of other sufferers, especially someone who is embarking in the early stages of this journey. Your tips are so valuable and worthwhile. You have to stand your ground and demand to get the proper investigations and treatment, because so many people don’t understand fully endo and what sufferers are going through. I think being a nurse I do get a different approach, many Drs have asked me , ‘what do you wish to happen/plan’, because they know I’m not gonna get passed off easily and I know the rule book. I have got my hands on my referrals and notes and they always start of the opening line with my job. What you are doing is fantastic , and you are just right , especially when you guys in the US have to pay so much to be seen. Whereas in the NHS we can ask to see someone else for free. However, in my case i have paid for a private consultant, because I didn’t want to wait on the NHS, I couldn’t bare the mean time pain. Whereas, now I’ve been seen, but I can afford the laparoscopic surgery, I’m on to the NHS waiting list for it for it.

Fair play to you, patients enduring any chronic condition know their best and they know there pain management best also. I hope you are doing well, thanks so much for everything x x x

You're a sweetheart, thank you, that means a lot! XO!

Wow, you are a nurse! That's great news for you I bet. You must have a good handle on your health problems? You sound knowledgeable and all. It sounds like your own self diagnosing and symptoms are taken more seriously than the average gal. If you have any indy or rule book tips to share with us, please do so :)

That's good to hear they ask you what you wish to happen instead of just making the call themselves or spending the 1-2 minute appointment educating you about what you already know, lol. Feel free to tell them for the rest of us - take our symptoms seriously and be more open minded, please! Surgeons especially it seems can be so tunnel vision, dogmatic and not always realizing all the other facets that play into patient care and cause of health problems, or so I have observed. Some do, thankfully.

Not surprised to hear you went private on some matters. I am dual citisen, Canadian-American and so I know how sometimes you must go out of pocket in order to hurry things along or attain more costly imaging and whatnot in socialised medical care. It is what it is and patience is key. I had a colleague who said Canada killed a lot of his friends with wait times. But here in the US they have disabled me. Nowhere is perfect.

I know how frustrating it must be sitting, waiting in agony for your lap in May. I try to stay aware of others less fortunate to find compassion and their strength and to help me be grateful for what I have. So I will share some more about here with you (feel free to stop reading my babbling :)

...here across the pond as you probably know we spend more than just money in the US for health care. Personally, overall (premiums, meds, doctors co pays) I have to spend 22% of my meager income on my health needs. And that doesn't include the out of pocket things I desperately need (massage and Acupuncture) which are $100/session or transportation costs and since we are archaic with public transportation that is an ordeal, especially if you are a responsible pain med users like myself, aka no driving. What is especially sad to see are women, single parents, working two jobs or one with a lot of overtime just to ensure they qualify to buy medical benefits and have the funds for premiums, treatment costs and of course day care, which around here, San Francisco Bay Area, is about $1200-$1400/mo per child! Nobody on minimum wage ($11/hr) can afford to live here let alone raise a child. Honestly, a $100k job is practically low income (median 1 bedroom rent in SF is $3500/mo, Oakland $2400). And to slave away for your 2 weeks off a year and ridiculous short term maternity leave. This country is in the dark ages versus Canada, UK and Europe in so many ways! With our pumpkin pervy prez it doesn't look like things will get any better anytime soon either.

Anyhow, I hope you can stay positive most of the time, able to take meds that can help ease the pain and remain hopeful and persistent.

XO,

Ouchie extra Grouchie

Hi emmalouise I’m sorry to hear your going through it with this horrible disease but the only advise I can give is invest in a plug in heat pad that goes around your waist and I use dihydrocodiene it’s very similar to codiene but metabolises differently along with naproxen which is an anti inflammatory (endo is inflammation within the pelvis) so I would suggest combine the pain relief with an anti inflammatory and the heat pad.

Good luck big hugs. Xx

emmalouise1995
emmalouise1995 in reply to Yazza

Great idea About the plug in heat pad! Must look on amazon here now . And I’m the medication too , it’s such a pity with these pain medications then come the side effects (e.g constipation). Thanks so much for your really helpful reply! I hope you are well x

Ive been where you are also hot water bottle front and back with sick bucket by me naproxen does help me but so does cocodomal but i cant the cocodamol unless im off work as makes me to drowsy i find ginger tea helps also as its an anti inflammatory but stay away from any caffiene it aggravates the pain

emmalouise1995
emmalouise1995 in reply to Lyn84

I agree Lynn, I’m very lucky I have a few days off work but the codeine has made me super drowsy. And I’ll have to learn to manage this up until surgery with other medications that’ll keep me still productive .I’ll stay away from the coffee too👍🏼 Many thanks for your reply, I hope you are well x

I feel ur pain pet. For me it was hot water bottle and camomile tea as camomile is recommended to help with endometriosis. Also pain killers. But tried to stay away as much as I could from those mainly warm things help. Also what really helps and I know it’s hard when I get pains with endometriosis is walking. I use to give out about oh no don’t have the strength and my hubby would make me go for a walk and it would help a lot. But everyone is different. Your pain sounds exactly like mine and I had endo and a cyst. Most women have them but if they grow can be very painful and need to be removed which they can do in a laparoscopy. U could just have endo I just have the 2 of them the same time so it’s hard for me to distinguish. Hope everything works out for you and if u need to ask anything please do. Hope the pain gets better for you xxx

I’ve heard lots about camomile tea, I must get some in the shop, thanks for the reply! I’m the same , like I’m not one for reaching straight to pain killers as soon as I get pains, as I do believe in exhausting all non-pharmaceutical options first.

I’ve been out today for a walk and you are right, I listened to a podcast and I found it the was distraction that helped, whereas lying in bed/on the sofa, I felt focused on the pain. But other days that’s easier said than done.

I asked my GP if I went to a&e and got reviews by a gynaecologist there, would they try and get the laparoscopic done quicker or do it as an inpatient if I were to get admitted. She said that Chances are slim to none in getting an urgent diagnostic laparoscopic when you are already on an NHS list, but if anything like yesterday happens again and the pain isn’t managable, I’d have no option but to go straight in and beg for it. As you say there could be a cyst , that could well rupture or this all could be something different. I just want a diagnosis so I can pin point and go from there ..

many thanks for your reply and hope you are well xx

If it gets worse I would Defo go to A&E as they should be able to organise at least an ultrasound which picks up cysts not endo but they can see cysts and least if that’s the case they can get the call rolling. They will only remove cysts if it’s over 3cm. But they can also grow mine was huge by the time I got it removed but again pain could be from endo on its own so hopefully u don’t have a cyst. Hope u get sorted soon and feel better xx

It’s just a vicious cycle isn’t it. Hopefully it doesn’t come to A&E, I’m due to fly on a weeks holiday this Monday and I’m so afraid this will flare up before or during. Thanks so much Nikki, just after getting the camomile tea ☕️ 👍🏼👍🏼Xx

Interesting, here in the states protocol for removal is 6cm or larger. My recent one was pretty painful, hemorrhagic, back and forth between 3.5cm-5.5cm.

Oh and me too, previous surgery for much larger cysts, they were 25% and 50% larger than the ultrasound showed (a wk prior to surgery). Ultrasounds aren't always accurate, hence a need for CT and Mri's for more accuracy.

I hope soon, someday, an imaging invention wI'll come out to detect endo and adhesions, that would be a game changer

Nothing works for me except buscopan 😕 not sure why but it's my life saver in time of pain... hope it eases soon for u x

Thanks for the reply! I’ll add it to the list! Xx

Hi ,since Tuesday pain be unbearable Not water bottles New best friend that and co DoCoMo to a small degree,when I tell people that have no experience sometimes feel almost like a hypochondriac.Best does help I have had that ties around my Easter does help.Hope things ease for us soon x

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