Pain, exercise and weight gain

[Awwy]

HiI have tried and failed with trying to be active and managing pain.

I have stage 4 endo extensive. All organs are adhered to each other.

I also have mixed connective tissue disease and being treated with hydroxychloroquine.

I have been on zoladex and Tibilone for 2 years waiting for a hysterectomy, excision surgery, bladder and bowel resection.

My weight has slowly been increasing over the last 3 years. 😰

I was active until about 8 years ago when my endo flared up. I have been on and off numerous medications for pain and hormone therapies over this time.

Last year I slowly built up my exercise regime again started slowly going for walks etc... and was even managing to run. I wasn't able to lose weight but I did get fitter.

The problem was I would end up with horrendous pain throughout my body and it would take me weeks to recover.

I've started getting to the point now where even day to day tasks are difficult due to pain. Washing dishes, cooking, having a shower.

I have started to do gentle exercise again and the pain my body is horrendous again. I dont eat more than 1500 calories a day.

Im fed up of the pain and weight gain.

Where can I get help?

Im really down. 😭

[Pinkybow]

I have no advice but wanted to let you know you are not alone, my weight has piled on, I have hashimotos as well as the endo which doesn't help and exercising just leaves me in so much pain. We decided to get a dog so I have a need to go out and walk her, even 15 mins at a time and I've found that has helped and also helped my mental health of waiting for surgery for so long. I hope you manage to get some good replies for advice 💗

[Awwy in reply to Pinkybow]

Hi Pinkbow

Thank you for your reply. I also have hashimoto's. 😔. Thank you for your kind words. I am having sessions with a private mental health practitioner as I was finding it hard to cope. They have helped me immensely. Wish doctors understood the impact on us with the lack of any support offered other than pills. X

[Goiaba]

I’m so sorry you are in pain. I was in a similar situation in July when I found my surgery didn’t go as well as planned and flared up again. I have this awful pain on my left leg that limits what I can do and this really triggers my anxiety, which triggers eating disorder behaviour. I have started counselling for a good few months now and this has helped me live better with my pain. I’m also on zoladex/Prostap and tibolone for 5 months now waiting for a hysterectomy. My pain team prescribed amitriptyline and this has changed my life! I gradually went back to exercising (weight lifting/strength training) and it was super pain at the beginning, I’d take longer than usual to recover but now it is part of my routine and I can’t be without it! I know it is so hard to hear this but my therapist helps me live a better life despite my pain because I decided to stop fighting against it - I’ve been told my pain is not going anywhere ☹️

[Awwy in reply to Goiaba]

Hi tsukaponto

Thank you for your reply. I think I have gotten used to being in pain to a certain extent. Thank you I will keep up with perseverance. 💜

[ocke2030]

Hi i have stage 4 and similar extras to you i have learnt to be kind to myself if i feel tired i rest if i get invted to places and dont want to go i dont feel about it i do a zumba clasa once a week but it has tone me up after 2 months but the endo belly will never go no mater what i tryI am also waiting on a hysterectomy just so fed up its exausting doing basic stuff like you said washing up etc.

hoping for some relief once hysterectomy is done

[Awwy in reply to ocke2030]

Thank you ocke2030.

So many of us in the same place. Waiting seems like forever and not knowing whether it will make a difference either. 😕

I will persevere through the pain and adapt. I tried aqua zumba and that had the same affect on my muscles, but at that time I didn't have a diagnosis or any treatments. Mighy give it a go again.

Stay strong. 💜

[TogetherWeAreStrong Moderator Endometriosis UK]

Awwy your post really spoke to me, as with the other ladies I experience a lot of the issues that you are facing and it does bring you down. My weight increased in my late 20's, when I read the side effects of the drug I was taking, weight gain was one, with my Doctor's approval I stopped taking it as I was thankfully pain free. I experienced a few years reprieve before my Endo flared up again, it was then I manged to get fit and lose weight.

However, I am exactly the same when it comes to exercise now, it tends to cause further flare ups. I am unable to schedule a routine activity as the flare ups just happen! So I too am looking for the answer to this questions, so lets see where we get.

Currently, I do do as much stretching as possible, like in the kitchen, when I am kneeling down to dry my hair. It's nice just to be in a gentle pose and it does feel nice on your muscles. This is especially nice in bed when you are post flare up, it feels like you have your body back.

The only other thing that helps me, is a lot of self love and patience with myself. Treat yourself like you would a friend or family member who was ill, the first thing you would tell them is to rest, mind and body...💚

[Awwy in reply to TogetherWeAreStrong]

Hi TogetherWeAreStrong,

Thank you so much. I have gone back to docs and asked for a full thyroid panel. I also think that being medically menopause for nearly 2 years is also contributing to weight gain.

Taking on everyone's advice I am being kind to myself. Eating no more than 1600 calories and have started pilates.

Thats all I can do. I have found an acupuncturist whom I have booked in to see tomorrow to help with pain.

I treated myself in the Rituals sale. 😊💜

If I ever discover a routine of holistic therapies and diet that works i'll be sharing on here !

[Stars_sunshine_01]

Hi, after just joining and reading through your posts about pain management, struggling with exercise and putting on weight. It has taken me years to get diagnosed, and again I really struggled to get referred for laproscopic surgery.

I have tried lots of ways to ease the pain and symptoms. I have found massage has been a real help with my lower back and leg pain. It's expensive and not something I can have every week. It's a shame that NHS Physiotherapy do not offer manual therapy, teaching selfcare pelvic abdo message.

I have been able to increase my exercise to strength my muscles.

I thought I would share, hot water bottles and massage have been a massive help.

[Awwy in reply to Stars_sunshine_01]

Hi Stars_sunshine_01

Sorry to hear of your struggles. Totally understand it takes ages for diagnosis.

Hot water bottles i use a lot but my skin has burnt from overuse so I do need to stop to let it recover.

I found someone who is helping me with some strength training which is helping slow. I am in pain for 3-4 days after im just persevering.

Still not lost anything after 3.5 months. 🙄

Hope you get sorted soon. X💜

[Stars_sunshine_01]

I definitely recommend message, the holistic side too, it's been such a help for me.

Thank you for your lovely message, I hope things improve for you soon 😊

[Frodo344]

have you tried cycling? I find running or a lot of other exercises jostle my tummy and cause pain. But I find cycling doesn’t at all….stretches out sciatic pain too xxx

[Awwy in reply to Frodo344]

No i haven't tried that 🤔 id have to go to the gym for that and I don't feel comfortable there with my weight. 🥺