Hello everyone, It's a long one I'm sorry but I thought I would come on here again as you are all so lovely and help so much.
In my recent a&e visit I had been recommended to go in as my pain had been so severe my GP advised it may be appendicitis. I was seen by a doctor fairly quickly and he ruled out any sign of infection and said it may be ovarian cysts or endometriosis but there is no point operating and checking for this as it never works (I have since booked an appointment with an endometriosis specialist privately as I feel as though I have been ignored for the last 7 years worth of pain)
I then asked if he could at least advise me on how to deal with the pain, as I am having to take co-codamol whenever I have a bad flare-up of this pain (nearly every day) I was not saying that I take co-codamol every day but that I use it for the maximum 3 days over my actual period, and then sporadically throughout the month as nothing else works ( co-codamol doesn't work fully it just slightly eases this) and he started asking me if I had any side effects when I don't take co-codamol, I said no and he said well people who are addicted to co-codamol like this usually feel dizzy when they don't take it!!! I was very very upset that he is now assuming I am addicted to co-codamol, but giving me absolutely nothing to help me.
So my question is how do you deal with this pain? It is a constant every day ( on and off my period) throbbing/burning pain over my abdomen and ovaries on the left and right side constantly, cramping over my ovaries, unable to walk, unable to sit in certain positions as it hurts too much, my right and left side waist severe cramping pain. Co-codamol will ease it a little bit, a hot water bottle doesn't work, and having a bath gives 5-10 minutes of relief, and then it starts again. I feel defeated, I have tried several contraceptive pills and they don't ease the pain at all they just cause mood swings/depression. I feel like I can't go to a&e again if this gets too bad as I'm not going to be taken seriously and they don't give me anything to help, I can't go to my GP as they say the same, and my endometriosis specialist appointment is not until the 12th May.
If anyone could give me a little bit of advice on how they deal with the pain as it is getting too out of hand and I have nowhere to turn
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Lululemon98
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I would agree to try not to take co-codemal, I have totally been there though, it didn't help with my pain but it was the only thing that helped me sleep so I had a break from the pain. I bought an electric blanket and would like on my front with it, that really helped but only works whilst your lying on it. Removing dairy from my diet had the biggest impact, not sure if that's just me though. I would look at your diet, when you in pain it's difficult to find the energy to care but it really is worth making sure you don't get anemia if you have endo, that makes the pain worse and the fatigue unbearable. I would also use pain relieving mediations on YouTube which sounds woowoo but I would get myself in such a state over the pain that I couldn't mentally handle it, they really helped to calm me down so I could manage. Then my laparoscopy and fitment of an Merina IUD really solved everything for me.
Hi thank you for replying, I know co-codamol isn't the best thing to take but sometimes I am so at wit's end with this pain it's the only thing that gives me a little bit of relief 😫 a lot of people have talked about the pain meditations on youtube, I have used meditations for other things so I could give that a go. I am hopefully going to find out the problem with an endometriosis clinic soon, so hopefully, I can have a laparoscopy and go from there. Thank you for replying
Re the co-codamol, it sounds like the A and E doctor was saying you are clearly not addicted to co-codamol and shouldn’t worry about taking it more often.
Your GP can give you additional pain relief like NSAIDs such as diclofenac, and also some other options, while you are waiting for your Gynae appointment. For cramping some people find Buscopan works - again via GP.
If the GP is acknowledging you have enough pain to go to A and E they should surely be doing something about it now appendicitis is ruled out? Sorry, I know arguing your case with GPs can be hard enough when you’re not in pain. I don’t always follow my own advice!
Hope you get a better solution once you see the specialist.
It may have been the case with the doctor, as I know I'm definitely not! Thank you for that recommendation I have never heard of them before and I could speak to my GP about that. I know, it is very tiring trying to speak to my GP sometimes but it's worth it like you said, thank you so much for replying x
It is horrific how you have been treated, but sadly uncommon.
If you can afford the private treatment then certainly it is worth pursuing since they may be able to help you come up with a plan forward tailored for you. You are also likely to be seen quicker. There are different options to treat symptoms and no two people are exactly the same when it comes to choosing the right option for them. The things I would advise to be cautious about are suggestions of ablation over exision (ablation is like cutting a weed off and leaving behind the roots) and anyone who tells you a hysterectomy will cure endometriosis.
As for options to help with your pain in the meantime:
- Microwave heat bags. I get mine from a seller on Etsy who custom makes me covers and does an assortment of shapes and sizes. My favourite are the unscented flaxseed ones separated into strips so the contents stay evenly distributed.
- Some prefer a hot water bottle and the Nunu hotwater bottle is a popular choice as it can be tied around your waist.
- A tens machine. You can get one at a local pharmacy. I recommend a two wired one over a single wire. You can choose to use it with one or both leads and gives you the option of placing pads on two or four points - helpful if for example you have lower back and leg pain. Buying replacement pads in bulk online is much cheaper but some are better than others- I prefer the brand Healthcare World which I buy through Amazon as they stick well and don't easily detach which can be annoying.
-Relaxing music. When I'm in too much pain to focus on anything sometimes I lay in a dark room (some prefer with candles but I worry I might fall asleep eventually) and turn on relaxing music. It doesn't ease the pain but can sometimes help me to cope. If relaxing music doesn't do it for you maybe you may benefit from making a track of feel good songs that might be more to your taste. I'll either listen via earbuds or with a speaker near my head so it 'demands' my attention.
- On days when you can focus past the pain, distractions that can be utilised from bed or the couch are helpful. Favourite films or TV box sets that are prepared for easy access, simple games on your phone, especially time sensitive ones that need your complete focus for short spurts. I love to read but often find the process of reading too far a stretch on bad days and will sometimes cue up favourite novels on audiobook as it is something I can do with my eyes shut. Finding narrators that you enjoy makes a big difference too.
- Soft, loose clothing. Things that don't restrict, rub, or put any pressure any where you might have pain. Loose tee shirt/jersey material dresses, night shirts/gowns, loose elasticated lounge wear and PJ's. During a bad flare all my nerves become hypersensitive so even things rubbing against my skin makes it worse. Also things you can layer as ongoing pain can make it hard to regulate body temperature.
- A body pillow and a soft blanket you can use to support yourself in different positions.
- If you are up to it, gentle stretching or even yoga focused towards women's health and endometriosis. You can find free guidance and videos online, such as on YouTube. There are tonnes of options so take the time to look at what is available and also meets your needs and capabilities best.
- Speak to your GP about pain relief. You shouldn't be left to suffer. You may find a strong anti inflammatory such as Mefenamic acid helps, which is commonly prescribed to women with endo, and is commonly a starting point for prescription pain management. It is usually prescribed with somethin like omprazole to protect your stomach. Co-codomol can be a poor choice for long term pain management as it can cause issues with constipation and endo can already cause bowel issues if it spreads there.
- Ask your GP for a referral to a pain specialist/clinic. They can discuss options that include both prescription and non prescription treatment.
-Keep easily accessable food and beverages on hand, including things that are ready to eat as is or can just be popped in the microwave. Keeping yourself hydrated and fuelled can go a long way to helping you cope. I also try to always make sure I keep the following on hand as I get pain induced nausea that can make eating unappealing: crackers, ginger cookies/snaps, ginger ale/ginger beer, 7 up/sprit, ice, cereal bars, non citrus fruit.
None of these are 'cures', but hopefully there is something there that helps ease your suffering, some coping options that may assist, and some suggestions that aid you in seeking assistance professionally.
When you see a specialist about your endo they may discuss options such as a mirena coil and/or oral progesterone treatments. Both have pros and cons and I recommend reading up on them ahead of time, along with with information on medications that put you in an induced menopausal state and,IRO surgery, ablation Vs exision so that when you do meet with someone you have an idea of what treatment options there are and you can prepare some questions you may have about any of them ahead of time.
I wish you luck in finding treatment that offers you a better solution than just finding ways to cope with the pain.
Thank you so much for this, I will definitely be trying the recommendations you have given.
It is very tiring and exhausting most days, I have been considering yoga for a while as with my pains I really struggle to stick to my gym routine and end up staying in bed for days 🤐.
Thank you so much for your time I will definitely be trying these.
The seller on Etsy that I buy my heat bags from is MyVintageCow. She doesn't have the pillow cases listed but I've just asked when ordered and she has accommodated me. She is great for helping with custom orders. etsy.com/uk/listing/7017831....
I've had my body pillow for a while and purchased it in a store a couple years ago, but if you Google 'body pillow' you will come up with options. There is a variety of options for all kinds of different types of support. Personally I just have a straight long one that I manipulate/fold but there are different options. It depends how much you want to invest. Mine was only about £15 plus cases.
So frustrating how you've been treated. I'm not sure why they say the op doesn't work, you're the second person that's said that recently. If the surgeon excises the endometriosis and looks around your abdomen properly it does work.
Etoricoxib works very well for me (it's an NSAID) it needs to be taken with Omeprazole to protect your stomach. It's is easier on the digestive system then naproxen. Important to speak to your GP and firmly insist on a good painkiller like Etoricoxib.
If you would like natural remedies that help I'm happy to share my research with you. I have stage IV endo and it's all helped me. Feel free to send me a private message xx
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