Advice from couples with endometriosis

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I really don't know where to start, but I could do with some useful advice from members in similar situation.

Been with DW for few years, wonderful wife and mother to our lovely kids. She has been battling endometriosis (before we met) most of her adult life. Over the past 7years, and contrary to medical advice, it has gotten worse!

We were advised tho there's no cure, the symptoms should improve with time, and after childbirth. It's terrible to watch my wife in pain almost every single day! I am concerned about the heavy prescription medication (tramadol) she has been on over the last 5 or so years. Im very tempted to highlight my concerns in confidence to her GP, although I'm unsure if they will listen to me or take any action. But I am really worried she has become addicted to them, even though she still lives in pain.

I'm really worried about the future, she has a history of depression and recently diagnosed with PTSD. We are a young family and the kids need their mum.

I'm not sure what I really want here, perhaps some advice or just to let it all out as I've few friends and don't really want to discuss my wife's medical issues them.

I am aware of the enormous tasks ahead. I love my wife and I'm not giving up! It would be helpful to read from someone / couple in similar situation.

What's giving you concern over her tramadol use?

If she's in severe pain on a daily basis she needs strong medication. And if she takes stuff like tramadol daily it is clinically inevitable she will develop a physical dependence on it and suffer withdrawal symptoms if she stops.

That's not a moral failing on her behalf, it's simple biology.

Some people need opiates to be able to get through the rest of their life while dealing with severe ongoing pain. Thank your lucky stars if you don't know what that is like.

I have endo as well as other severe chronic pain issues in my bladder and take morphine daily or I wouldn't be able to function. If you have any questions I'll be happy to answer. I just want you to know where I'm coming from.

There is no cure, but there are treatments, such as ablation. Your wife should ask about a referral to one of the BSGE specialist endometriosis centres, where an appropriate treatment pathway can be explored. Being sent away with painkillers isn't addressing the problem at all.

Thanks @LemonShark

Thanks @ScreamingValenta. You really hit the nail on the head. I feel really helpless. She's been repeatedly sent home with sedatives which have become less effective over time. How can we put pressure on the gp for further treatments?

Thanks

I'd echo screaming's advice at looking for a BSGE endometriosis centre, There are specialists that can surgically cut out areas of endometriosis, even the deep infiltrating areas, which in a number of cases can offer a cure but will anyway improve her pain. It really needs to be done by an expert though.

Where in the country are you?

I take it as read that your wife is not currently under the care of a gynaecologist at all, this is just being "managed" or in this case not by her GP. At the very least she needs to see a gynaecologist preferably at such a centre as endometriosis itself is well outside a GPs general remit.

I would also recommend a BSGE endometriosis centre.

Endometriosis UK is a good site for info and the have a helpline too.

Has your wife seen a gynae at all for this? Has she had surgery? Surgical removal is usually the best treatment, followed by hormonal management. I second the poster who said she should ask to be referred to a specialist centre.

If you have completed your family long-term treatment with GnRH drugs is an option after surgery. It's not perfect but nothing is. It has allowed me to reduce my opiates by about 70%.

Sometimes a combination of drugs in lower doses is better that one drug in a higher dose. I take Lyrica for nerve pain and prescription anti-inflammatories alongside my opiates.

I completely agree with those suggesting seeing a specialist. She shouldnt be left just managing long term with painkiller.

I had / have severe endometriosis. Everything changed for me when I moved from a general gynae consultant to an endo specialist (I had to pay for one private appointment to do it, which feels morally iffy but I was desperate).

Since having kids I have been on the pill for three years with no break - no period & next to no pain. I also follow the endo diet which I think played a big part in helping my symptoms improve.

She did see gynaecologist for a while. Numerous internal exams and unnecessary tests. In fact, at some point they said she had a nasty infection and started her on antibiotics before everything came back clear. It really has been a traumatic experience for her.

She has had laparoscopy twice, and we were really hoping it would improve after childbirth. 3+ years on, no improvement.

She was put on the pill yet she was still bleeding for months. She gave it up as the pill was really messing her system up as-well as making her gain weight.

@MountainDweller @AttilaTheMeerkat
We are definitely going to push for a referral

We will definitely look into the endo diet as well

Thanks to everyone else that contributed.

There's a Facebook page called Endo Empowered - the woman that runs it is a bit annoying but she is very knowledgeable and it'll link you to lots of info & advice about diet, supplements, research etc. X

If your family is complete I would have a hysterectomy if it is affecting her quality of life this much