What can I do to help?

[Ameliafaithrose]

My partner is recently going through the diagnosis process. Recently been diagnosed with PCO but they still suspect endometriosis but she's waiting for surgery. She's spent the last couple of weeks in constant pain. She has a range of pain killers prescribed including nerve blockers as well as morphine. But nothing seems to be working. She's worried about going to the hospital because last time she was told it was all in her head from someone in A and E. I'm just wondering if anyone can help me and help me understand what I can do for her?

[Anna_EndoUK Moderator]

Hi Amelia,

It's really good that you're trying to support your partner as best you can! And horrible that she has been told it's 'all in her head' by someone in A&E :-(!

On my really bad days, I find the only thing that helps me is a Tens machine (as well as my usual pain killers). You can get them reasonably cheaply from Amazon. They don't work straight away, but I normally start feeling a bit better after about 20-30 mins of wearing it and you can wear it all day if it helps. The nerve blocker tablets take a month or so to kick in, so worth persevering with them. Your partner could also ask for injections that induce a temporary menopause such as Prostap/Zoladex whilst waiting for surgery. It sounds drastic, but they can help bring the pain under control and the menopause is only temporary; the side effects (hot flushes etc) can be lessened by taking HRT.

Unfortunately, endometriosis causes chronic pain and it really can be trial and error to find what works for each person. But if your partner's pain gets worse or changes, it's important to go and get it checked asap.

I hope this helps xx

[Dogmad6]

The best thing by far that you can do for your partner is to believe what she says and support her no matter what any doctor may so. So many people get fobbed off and told it's all in their head or they have IBS.

I've had 5 operations for endometriosis yet I got fobbed off for many years.

Most people with Endometriosis get fobbed off initially.

Having a partner who believes you makes a huge difference. Also if you can do all the heavy work at home when she's not in pain and exhausted, that would be a massive help I'm sure. It would also show you believe her and what's happening to her. It's a vicious illness.

Hope this helps xx

[Dogmad6]

ps sorry for various mistakes in my post due to predictive text. Should read ' may SAY' and when she IS in pain and exhausted.

[Missy100]

Hi!

Caring is the number one most important thing you can do, which you obviously are already doing buly reaching out.

Everyone is different is what they need/works for them. My suggestions are as follows:

- Ask and listen. You naturally want to make everything better, fix the problem, stop her suffering, etc. She may sometimes just need you to ask and listen. Being able to vent and be heard helps more than many people give credit for.

- if she wants suggestions offer them, but try not to force/push them in her. She will be in pain, exhausted, emotionally vulnerable, and often at the end of her rope. Unfortunately it means she won't be at her best to support you or necessarily be the person she wishes she could be for you.

-Talk to someone. Whether that is someone you are close to who you 💯 trust to keep their silence and be respectful and supportive or looking for someone you can speak to Inna more professional manner through a GP surgery or charity like MIND. Being able to process your own difficulties that are occuring now and may occur ahead is just as important. Not taking care care of yourself will not leave you with the resources to be there for you partner, no matter how much you want to be.

-If she is looking for pain assistance, she may or may not some of these work for her. A lot of it is what works for the person as much as the condition:

* Microwave heat bags. There is an assortment of filling and scent options. Lavender is great for relaxation if she likes it and doesn't react. But with any scents beaware essential oils could be used and they could be hazardous to pets. My preference is unscented flaxseed bags that I have some different shapes of. I buy them off a lovely seller on Etsy who also made me custom removable 'pillow' cases for them so I can change then and wash them. I use my bags rejecting them over and over most days. They are surprisingly resilient although will eventually begin to wear through.

* Some prefer electric heat pads or hot water bottles. There are forms that can be tied around the waist or to belt loops. There are also Inna pinch stick on heat patches when on the go from pharmacies and the like but some need to be stuck to cloth (the inside of clothing) so read instructions.

* Whatever heat method she uses be aware that deep seated pain can easily lead to using it so hot it can damage skin trying to stop the deeper pain so keep an eye.

* Tens machine. There are lots on the market. Lloyds does a four pad one I've used for years. The four pads can be used as two by only using one jack. The pads are much cheaper in bulk online but qualities inrepect if sticking power can vary

* Body pillows can help support her body in positions that she might find help. There are tonnes of different ones from a single long pillow to one that goes down both sides of the body to wedges and all kinds in between. You don't have to get an expensive one.

* Music lists for soothing, sleep, meditation can help and be a personal way you can creativing contribute if you want to make something with a personal touch. There are lots of apps with everything from meditation, sleep, breathing, talks, soothingly read stories and more on the market. Most can be trialled if they require a paid subscription. I've found Calm works for me due to variety and always adding new things and it was a one off per year of less than £30 so can be gifted. There are lots out there now, though, so it is worth exploring for what she likes best.

* Gentle stretching or yoga might help when she is up to it - keeping her flexible and mobile if nothing else when pain makes you prone to tense up and over time lose some flexibility.

*Massage might be received well, but be aware she may also hurt too much to be touched or be receptive one day and can't stand touch the next because of the added stimulation. Massaging a different part of her body to distract may help too. Massage can help with gut health too if she is struggling with her bowels which can happen with some medication and/or endo.

* Pain relief is tricky with medication. What works for one doesn work for the next and then there is the time it takes to get into her system if a as and when needed treatment. If morphine doesn't work check what kind she is being prescribed. There is more than one. Some find other medication more helpful, sometimes even a less potent one because of how it responds to the pain in their body. For example tramadol. I'm not saying a change will help but it might and if she is receptive she could bring this up to who is prescribing her pain medication.

- if she has been suffering long term ask for a referral to a pain clinic. It can take time to convince them. Never.put it off as you can cancel if later you don't need it, but you can't go back and do it earlier.

* The cold hard truth is none of this is likely to help in its own. It is trial and error and finding what does and doesn't help - whether that help be big or small. Anything that helps in anyway means a reduction in suffering no matter how little. It can add up.

* Try to push the hospital to admit a support person. Not being alone when trying to get through the minefield can be hugely helpful. I will tell you as will many people that the push back she will experience, the gaslighting, the disbelief, the lies....sadly it is the norm not the exception. And the fight seems impossible sometimes. If they won't let her have a physical person ask for a digital presence. Ask to record conversations - say she needs it for mental health/memory/records/personal use/etc. There is no reason she should be denied the right to record her own medical interactions as long as she doesn't invade another patient's privacy (such as video in a shared room/ward).

- follow up any negative gaslighting/disbelief/inappropriate professional comments/etc. Report them. Without acting nothing changes. I hate saying this as I know there are so many wonderful hard working professionals we owe so much to in the medical Fields across the world. But don't let the negative ones steal from the good ones by ignoring or putting up with their unacceptable behaviour. Your partner doesn't deserve it. We go to a medical professional often at our worst, desperate for help. We deserve to be listened to and respected.

I am tired at the moment. There is a lot of info out there and much more that the wonderful people in this community can share. I hope some of it helps you and your partner.

Feel free to message me if you have questions. I may not reply right away, but I will reply as soon as I can.

Please excuse any typos or unclear info. Feel free to ask for clarification or correction. I've been struggling on my own journey and it limits my energy and pain free time and so I'm not at my best. I think it is better to contribute how I can rather than not try.

I wish you both all the support, strength and answers you need and seek.

[JOSANDY40]

Hi there,Has she tried a TENS machine? Using 2 hot waterbottles 1 front. 1 on back.

Has she tried Ponstan 40 painkiller?

Simple Belladonna for cramps, Fennel Tea, or dried Fennel from health food shop! (for me they have amazing results!)

The problem with strong painkillers like Morphine is they stop/slow the body from emptying different types of waste products and can compound pain. Yes sometimes they are of little help. Myself with Morphine I will only take it for 2 days, try to have a Day off and use no or another painkiller for 2 days. Inflammatorys are good for swelling. Antihistamines tablets might also help.

Check her diet. Cut out soya, milk, bread, pasta, cheese, mushrooms and bananas, advocado, celery, melon, beer, lager and all drinks like coke unless nausea then sip the pepis-cola just relieve that.

Eat simple foods, fish, chicken, rice, prunes, potatoes, green veg, salads, more fruit, more water. Use a soluble Low food MAP diet.

Worrying, stressing in pain doesn't help.

If she can have gentle sex or orgasm this can give some relief. It is probably the last thing when someones in pain would consider but the endorphine release as with swimming can relax the body.

Please come back to me if you need further info on matters.

❤️