Updates- 😱😤🤯🧐: Hi Feel like the only... - Endometriosis UK

Endometriosis UK

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Updates- 😱😤🤯🧐

Awwy profile image
Awwy
16 Replies

Hi

Feel like the only ones that will understand are people who are the same as me. I previously posted that I had been listed for surgery as a priority 2. So I saw two consultants this week and was told that I havent been listed at all. 🤯😵😤

However both the consultants I have seen were brilliant and understanding. I wasn't rushed, I had the opportunity to ask all my questions (thank you all for helping me with those). I spent an hour with each of them. 🙄

So in a nutshell. I have severe stage 4 endometriosis. My surgery will take 11+ hours. He said it is very challenging. I am having a total hysterectomy. Bladder resection and I havent seen the bowel surgeon but will possibly have a bowel resection too. He has listed me today. I watched him do it as I said you keep telling me this. Made him do it in front of me.

Will happen in the next 6-12 months... hmmm....

They checking my kidneys as I have severe back pain. (Currently all burnt with my hot water bottle 😬)

I need an update MRI scan.

Oh ...this one i knew was coming . I have to lose weight. 😟. So I told him I have been on a calorie deficit, have a personal trainer, looked at my nutrition and its not moving.

How can I lose weight please... my bmi is 40 I need to get it to 37.

Im staying on the zoladex. He wanted me to try a different add back HRT. I asked him what the side affects were and guess what.... weight gain.

Then he said its rare... but I was like im a rare specimen so if its listed im not risking it as I am already struggling.

I've got 6 - 7 months to get my bmi down.

Help from anyone greatly received. 🥰

Thank you for reading.

16 Replies
AllthatGlitters profile image
AllthatGlitters

hello sorry you weren’t even listed for surgery, just awful, I would have been so mad.

Yes HRT definitely makes you gain weight, well me anyway. It swells me up and my hands and ankles have a lot of water retention, my boobs are like bullets! 🤮I can never loose weight when I am on any kind of hormone treatment, even if I didn’t eat all day I would stay the same on the scales.

It sounds like you are doing all the right things and you even have a personal trainer, so they will know you are seriously trying.

I use the Balance App which gives you lots of information on HRT and there is a forum on that too. Maybe have a look on there.

I hope you get your surgery soon! Xx

Awwy profile image
Awwy in reply to AllthatGlitters

Hi

Thank you for your response. 😊

I will have a look at that app. I am passed the point of being mad now.

I finally feel like I'm getting the care I need and being listened too. These are all a new team and been re-referred to more experienced surgeons finally.

It will eventually happen.

💜

Seeingred profile image
Seeingred

Hi there, I'm glad you were able to get some answers. It sounds like you have two good consultants who are willing to give the time. This isn't for everyone of course but intermittent fasting has been effective for me. Obviously in a weight loss way (around two stone in six weeks) but it also helped in a big way with endo fatigue and it also helped with some of the pain also. When I mentioned to my consultant, she did mention it can be effective for people with endometriosis for more than pre surgery weight loss (my reason) x

Awwy profile image
Awwy in reply to Seeingred

Hi,

Thank you. I have tried fasting before too. I'll give it another go and see. I have seen those pics on the Internet where they give you times depending on where your body fat is. Not sure how that works. 🤷🏽‍♀️ Thank you 💜

Seeingred profile image
Seeingred in reply to Awwy

I didn't do anything like that. I did the 800 calories, three meals a day, everyday for around seven weeks it was in the end. Drank a lot of water and made sure my main fasting period was overnight while asleep. It's a drastic option I know, not underestimating that at all, and it feels overwhelming at first though because you think how can a body survive off that? I did find that once I jumped in it felt better because I was just getting on with it. And I started to feel better really quite quickly so it felt worth it, because of the positive effect in my symptoms. I hope you're able to find something that works for you and you hear about surgery soon x

Awwy profile image
Awwy in reply to Seeingred

I've done 800 calories before when I needed to lose weight fast. Drank loads of water. Thanks. 💜 needs must. X

Seeingred profile image
Seeingred in reply to Awwy

It did get to a needs must situation for me. I left it all far too late. The surgery ended up being cancelled but the positive is I have more time now to make some positive changes x

ocke2030 profile image
ocke2030

hi , i am exactly the same! need all of the above! i joined a zumba class which i love but the belly it still there! i am also waiting bowel and gynae to sort me out ideally hysterctomy had enough if the pain etc i am being strict with my sweet stuff but also having a sweet treat if i want one.if i fancy a unecessary treat i try to distract myself but it is hard to loose the weight with all this gynae stuff good luck.

Awwy profile image
Awwy in reply to ocke2030

Hi Ocke2030

I cant do anything intense due to the pain and fact that I wouldnt be able to move for about 3 days after. As an example I've done 2 walks this week and just done my shop this morning. My legs are horrendous with pain and my shins are terrible. I have started pilates which helped with my pain at 7.30 am. However now its about 12pm im done for at least 4 hours. I need a nap. 😒🙄. Ill just fall asleep on couch without even trying. Joys of life. I've started using Dory's line now...just keep swimming 🏊‍♂️.

Thank you 💜

ocke2030 profile image
ocke2030 in reply to Awwy

aww i am so sorry you are suffering like this it so draining doing certain things shopping etc like a full on workout i am.at the stage where i dont sleep for morw than a few hours unseattled with thw pain etc cant win with it all ......

Awwy profile image
Awwy in reply to ocke2030

I hear you. I was referred to pain management in August 2022. My appointment is in April 2023. So like you my sleep is shocking. My legs have been in pain so everytime i moved at night...id wake up. Just no winning. I have tried a meditation now which helps with getting me off to sleep. Saw a private psychologist who helped me. I can fall asleep within 20 mins now. Before I used to toss and turn for about 2 hours. I have loads of pillows even a pregnancy one that I wrap around to get into some sort of a comfortable position. Hope your sleep improves too. 💖

BloomingMarvellous profile image
BloomingMarvellous

Entirely a practical level :

. The gut of endo sufferers is slower. Fact. This is for a number of reasons so not only is the digestive process sluggish down but the whole moving through our bodies is slooooow. So we hold onto more of everything , swell more and yup weight increases for a number of reasons. This can be from a number of metabolic and other factors. Sluggish thyroid ( more below), poor production of digestive /protolytic enzymes (see below), emotional holding because of the pain and consequent gut tension, dysfunction of the gut tissue ( leaky gut ) causing swelling and IBS type rubbish, and less able to literally push matter through and out for starters, pelvic floor dysfunction ( as well as the lesions and adhesions) causing endo belly and slowing the whole digestion and eliminating system down, calorific deficit ain’t always the answer either often the body responds to this as a major stress and also doesn’t get the basic nutrition it needs to function or heal = more weight. Loads. Going round in circles.

So understanding and figuring out what the main factors are for you and things you can sustain without getting into more of a tough spot will help. I made a number of deals with myself that changes were to be kind not additionally punishing, preferably things that benefitted the management of the chronic disease long term and not just short term gain, achievable and not overly onerous or taking over life and my brain . I’ve done the following to help my digestion process:

1) Worked on healing the leaky gut using firstly high quality EPA/DHA balanced Omega 3 for three months ( and still continue that ) after that adding a well studied effective daily probiotic. Use chia seeds daily as gentle fibre with good omegas too. It’s helped with my pain levels too.

2) Did a lactose challenge and realised had become lactose intolerance so adjusted diet. Reduced my gut inflammation. It’s not the worst thing to manage socially as realised not all milk products are out so worth doing the research and checking it out ( only takes 48 hrs off it ) Am way less achy so moving about is more of a pleasure again.

3) Drink enough water- I upped it on professional advice to between 3- 4 litres a day . I have to add electrolytes at that level. That’s not including other drinks . I find too much progesterone makes me hold onto water and I look like a bloater fish on steroids …

4) worked on pelvic floor core - (ask for a pelvic floor physio appt from your specialist team ???) I like Dr Angie Mullers info on this too. She demos a great tummy massage which helps the gut to ease and work better .Use a squatty potty stool for the loo . Doing work here is really key when having hysterectomy and bowel work as it can all relocate post hysterectomy and be a bit of an ongoing challenge.

5) I do repeat short gentle walks throughout the day when I can’t manage longer ones . It helps the gut and digestion move . Doing it early in the day increases my Vit D level which gets low with endo and causes more inflammation and depression.

6) I use a digestive enzyme blend of Bromelian and Quercitin to help my stomach process daily And use magnesium citrate powder to support my gut muscles move it all on . I added liquid Milk Thistle into juice to help detox my poor overladen liver of the side products of the hormone imbalance /meds and it struggled with and additional strain from the poor digestive system. It really helped with the nausea etc .

I slowed down my eating. If you don’t chew enough then the whole digestive process gets compromised and we get more ….bloating . The chewing kicks off stomach digestive juices getting going and being in a hurry means it doesn’t get a chance to do it properly in the first place. Meals take longer , I eat less because I get bit bored 😂 of the process sometimes or don’t have the time to eat a vast amount always , but my digestion is happier.

7) I added Berberine to help with metabolic resistance for both insulin (and likely the thyroid ) and tackle something called LPS (which endo gals tend to have more of …) which can cause hormone receptors to get blocked and be unable to receive the circulating hormones the body needs to function. In particular it interferes with the conversation and uptake of the active element of the thyroid hormone (Called T3 from T4 ) . It helps with the gut micro biome in general too

If you don’t have enough active thyroid hormones your gut motility as well as stomach acid levels gets reduced ….& slows way down . This leads to more constipation , weight gain and water retention. Taking thyroid hormones doesn’t sort it out either as it’s a receptor issue not necessarily a production one ( although that can also be a factor -joy ) In turn it can upset the cortisol levels further making weight loss even tougher and more stressy .

8) I use the Curable app to help me deal with the emotional side of the pain and tension I hold in my gut as a result. There’s some really cool stuff about how we even think about food can affect how our food burning ability behaves as well as how our gut moves or not.

9) I eat the rainbow 🌈. Lots of vit C and antioxidants and plenty of things like ginger , cinnamon, herbs and turmeric . Eating needs to be a joy not punishment but I make sure what I eat is nutrition dense and not refined. When my gut plays hardball, I make a pile of soup and at least I get to eat something okay. I’ve taken my experiences of being unkind and traumatised by the whole eating thing and made it a safe place again. Like most of us there’s a whole bunch of guilt crap around food and self worth which I now refuse to beat myself up with or let others. Eating well will only aid things - it won’t cure but it can help a long way , eating stressed will only bring more stresses , whether it’s restricted eating or highly refined crap and too much. I know if I do all of the above then surgery will likely be easier for me and recovery and long term stuff a whole bunch better.

I hope this might give you some relief or ideas And apologies for the length 🙄♥️

Awwy profile image
Awwy in reply to BloomingMarvellous

Hi BloomingMarvellous

Thank you so much for your advice. 💜

So I will look into everything you have mentioned.

Leakygut- I don't think I have enough stomach acid either and have all those symtops you said. So will definitely look into it.

Pain- I have learned a few mental techniques to deal with it. Part of it is medication, breathing and relaxation exercises. I feel emotionally and mentally in a much better place than I have been years.

Thank you for the time you have taken to respond and all the advice. 💜

BloomingMarvellous profile image
BloomingMarvellous

You can try the Curable App for free. I found some hidden gems and had been pretty on it - so keep it in the sweetie jar.

Awwy profile image
Awwy in reply to BloomingMarvellous

Hi, I have just starting reading in this app it looks fab. Thanks 💜

BloomingMarvellous profile image
BloomingMarvellous

I’ve found it helpful. Xxx

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