Mentally drained...

[NeedEndoSupport]

I had a laparoscopy 3 months ago and a coil fitted at the same time. My pains seem to have got worse, maybe coil related, so I had a doctors appointment again today and have got an examination booked for next week. I have been struggling with pains for 2 years, which I know isn't long in the grand scheme of things, but it's a very lonely things to deal with. My friends and boyfriend see this examination next week as 'another step in the right direction' and 'really positive' but I can't find any positives in any of it anymore. Even on my good days I still have pain and I am jealous of everyone around me who doesn't have it. My life is great and I am super lucky, but I am so incredibly drained. How do you deal with the loneliness? I need some ideas!

[Cailleach]

This is a late reply so you may have been seen by now. If you are finding the coil is making things worse then I think you should ask for it to be removed. I didn’t have a good experience with it and from whatI have read of other people’s experiences on here, it certainly isn’t for everyone.

I would suggest you keep on at your GP to try some different meds till you find something that helps with the pain, there is quite a lot available. Also if things are not settling down, a referral back to Gynae as well.

It is hard to live with constant pain, and yes, I would agree it can be lonely. Often people want to emphasise the positive like your boyfriend is doing when really you just want them to understand what you are experiencing right now.

Fatigue can be a major symptom with endo and it is hard to deal with. You might find some resources online. It is really hard to accept that there are limitations on what you can do because of pain and lack of energy, in comparison to other people around you.

I thinks it helps to confide in a couple of people you are close to what you are really experiencing and feeling. You could also think about counselling.

I have quite a good book as well, which is not about these issues, but about non medical approaches which can support people with endo: Endometriosis Healing form the Inside Out by Carolyn Levett. It might give you some ideas that help.

I hope things improve for you.

[NeedEndoSupport in reply to Cailleach]

Thank you for your response.

Since this, I have had swabs for potential infection at the GP and put me on precautionary antibiotics for BV. My swabs came back normal today so told to stop the antibiotics now. No sign of infection which is good news, but doesn't explain any pain. Back to gynae next week.

For fatigue, do you recommend any vitamins or foods that could be best to try? I have a relatively healthly diet, lots of greens already! Anything else you have tried would be great to hear.

I will check out the book, thanks for the recommendation!

[Cailleach in reply to NeedEndoSupport]

I would start with a good multivitamin and also make sure you get enough protein and complex carbs for energy. Marilyn Glenville is a nutritionist specialising in women’s health, have a look online for more information from her.

There are quite a few posts on here about diet, different foods work/cause problems for different people though.

[TogetherWeAreStrong Moderator Endometriosis UK in reply to Cailleach]

I had an appointment with a psychologist yesterday as part of my Pain Management Programme and we discussed diet and endo and I am certainly going to explore this further. Really looking forward to seeing where this takes me...

[TogetherWeAreStrong Moderator Endometriosis UK]

NeedEndoSupport thank you for your post and welcome to your new community. Cailleach 's response is spot on! I had the coil fitted and after less than 2 weeks had to have it removed due to the increased and immense pain it was causing. Other women have this fitted for years without issue.

It's hard to 'knock' your nearest and dearest when they are being so positive. But confirmation of your next appointment does not alleviate your pain in the meantime. So I understand where you are coming from.

The feelings of fatigue, physically and mentally are hard for me personally too as I like to consider myself active in both ways. It has taken me a long time, but I try to 'lean' into these feelings and treat myself kindly. I differentiate with what I want to do and what I need to do (there's a massive difference). If I need to be physically inactive, I will ensure I am dressed comfortably, am able to sit/lie as long as I need with no pressure from myself to move.

We have loads of great support groups, check out where yours is:

endometriosis-uk.org/suppor...

You would never feel lonely at any of our fundraising/awareness events:

endometriosis-uk.org/fundra...

We have devoted the month of March to various events, here's just one of them:

endometriosis-uk.org/1in10-...

On a personal note, I am so glad you found us, for me, this forum and the organistion have been game changers for me 💚

[NeedEndoSupport in reply to TogetherWeAreStrong]

Thank you! 🥰

[MoominBabe92]

Hi, I am so sorry to hear this! I haven't had a lap but I have an IUD (put in Nov 2020) it took over a year to 'settle' and even then I still experience 'IUD' cramps, on and off for around 2 weeks a month. I also went up two dress sizes mostly around my stomach.

I believe some of this pain was also bowel related as hormones always mess with my bowels.

I would advise seeking an internal ultrasound or mri in a few months to check the position of the iud, I had an internal ultrasound a year ago and I have only just been informed that the position of the iud actually may be the cause of a lot of my pain..! I've recently had an MRI to investigate further as they think it may have gone into my muscle..

my bleeding did stop with the iud, as did my crippling back pain, but I still get phantom period pain and iud pain regularly. Please also make sure you get adequate painkillers to help with iud cramps

I'm here to talk!! X