Update & advice needed.

[Iamyumyum]

Hi all it's been over 3 months since I've been here. Hope you are all doing well.

Since I was last here I have had a camera done with renal clinic they found a hernia that moves from my esophagus into my stomach I've been very unwell with acid backing into my lungs however am working forward on improving the stomach issue. The dr said they expected to see cancer in my stomach sooo glad it's not. They are very concerned about the mass of weight I'm losing so asked about my bowel habits and period. As soon as I stated I'm waiting on the gyne still to do the lanscopracy to 100% confirm endo which he believes is in bowel bladder and womb so he can send me to the endo team. She said now you are young ( I like her lol) in context of what she is doing next it's supposed to be on people 3 times my age but was requesting it from her boss.

5 minutes later he agreed the renal clinic are doing a thorax, abdominal and pelvis ct scan with contrast. They are looking for it as they would be the team to sort my bowels out..

My understanding she is trained in woman's health something I learned about on here..

So a MASSIVE THANK YOU to the ladies that shared that information.

Unfortunately my endo pain is now in all my lady bits, bowels, right hip groin and upper thigh, lower back and anal passage. The fatigue is extreme naproxen and hot water bottle just arent cutting it today the anal pain is pretty constant I do believe it's my own fault for having intercourse ( just to clarify no anal 😱he ain't that lucky 😂) with my husband followed by a slice of cake.. felt like living a little today lol.

Does anyone have any suggestions on relieving pain?

Also do any of you with endo bowel suffer with insomnia? What could I try i need to sleep?

Having my CT a week on Sunday tips on holding 2 litres of water in would be great to lol

I do apologise for my quirky humour have to see the funny in everything just lately.

[TogetherWeAreStrong Moderator Endometriosis UK]

Welcome back! I am so pleased to hear that you've learned information from our forum, I am the same! Please remember how important your contribution is too. From what you have said, I had a similar experience for most of 2022, mass of weight loss, post tests cancer free, increase in Endo pain esp rectum.

Endo and sex has always been an issue for me - sometimes it is pain free and sometimes it is not. This is understandably hard for a partner to understand.

I find that wearing comfortable clothing such as stretchy leggings or elasticated bottoms helps and a nice hot water bottle or microwave heating pad placed over them so as not to burn your skin.

I also find that having an array of drinks in, like tea, coffee, green tea, fizzy water, cordials and juices. The pain can drive your appetite away, but you need to keep yourself at least hydrated (get some ice cubes in the freezer).

Don't worry about the 2 litres. I have done so in the past. Keep drinking prior and don't worry about going to the toilet if you can't keep it in, it's easy enough to drink more water.

Insomnia is strange, especially when you are in pain and it goes on sometimes for days (weeks) with me. So my basic coping techniques are:

Keeping the space I am in (living room, bedroom) acceptable and clutter free for me (not necessarily clean)

Wearing comfortable clothes and having a wash

Plenty of reading materials (my Aunty sends me the magazines she has bought, I use my local libaries and you can look up anything on the internet, which is why I know spiders don't poo!)

I love Headspace on Netflix (other sites are available). Even if I don't actually fall asleep, I still feel relaxed.

Apologies for quirky humour. Not accepted. Quirky humour. Accepted.

[Cailleach]

re the CT scan. I have found that getting there early after having some water and then drinking lots at the hospital more helps me with the worry about peeing myself en route to the hospital. Locate the loo as soon as you get to the department as well to reassure yourself.

I also wear a pad and take spare clothes so all eventualities are covered but I have never actually needed them and I am someone with some urinary problems. In fact last time my appointment was delayed for an hour and I still managed!

Re the pain, you could go back to your GP and ask for additional painkillers, there is other stuff you can take alongside naproxen or there might be a better alternative to that. It is also useful to ask for something stronger, just for a flare-up like you are having at the moment.

Hope things work out for you. I have a hiatus hernia myself as well as the endo and other issues so I know how unpleasant it can be.