Do infections cause endo flare / worsenin... - Endometriosis UK

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Do infections cause endo flare / worsening endo?

CrochetCrayola profile image
14 Replies

I think I am starting with tonsillitis again, which I had in September and was so severe I was in a&e twice due to sepsis scare. With the fever and body aches I am getting extreme pain in my pelvis / bum / back which also happened last time - does anyone experience worsening of endo when you have an infection?

I’m awaiting surgery for removal of endo on uteri sacral ligaments and remove ovary from being stuck to the bowel.

Are we entitled to a free Covid booster on the nhs for endometriosis?

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CrochetCrayola profile image
CrochetCrayola
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14 Replies
AllthatGlitters profile image
AllthatGlitters

Hello I can’t answer the infection question as I didn’t notice a difference when I had an infection 2 weeks ago apart from the fact I felt wiped out.

I have multiple medical conditions and still not been put on the list for the covid/flu invite however if you log onto your NHS Inform account you can book your jabs on there for free 😀 xx

CrochetCrayola profile image
CrochetCrayola in reply to AllthatGlitters

Oh thank you - I’ve got the app. Just didn’t no if I needed to be ‘eligible’?

Poppyg16 profile image
Poppyg16 in reply to CrochetCrayola

Hi, I’ve been sent Covid tests from nhs in January and told to get help asap as and I’m eligible for anti virals if I test positive for Covid being in a higher risk group of getting seriously ill. I have other health conditions apart from endo including fibromyalgia and cfs. When it came to the spring booster I kept getting emails urging me to book and when I got there was turned away as I wasn’t on any immunity suppressant meds. I therefore thought I wouldn’t get an autumn booster but just walked into my local vaccination centre a few weeks ago for some advice and they gave me a booster there and then and also my husband as he is my part time carer. They also offered a flu booster but I paid for one at boots in September (even though it’s an expense, about £20) as I’m on a waiting list for surgery and felt I needed all the help I can get not to fall sick this winter and also not have so much fear of picking up flu from hospital if I get called over the winter months. They told me the eligible list is much more flexible now than it was in the spring and I also qualified because I have elderly parents who often need my care and support when I’m well enough to help them out. The people at the vaccination centre were lovely.

Hope this may help anyone who feels they may benefit or want from a Covid booster.

Poppy

CrochetCrayola profile image
CrochetCrayola in reply to Poppyg16

Thank you I may try a walk in vaccine centre when I’m better x

AllthatGlitters profile image
AllthatGlitters in reply to Poppyg16

I have fibro and CFS too and never get any letter from the NHS about covid and flu jab. I wonder who decides on what patient goes onto the list - a GP 🤷‍♀️

Poppyg16 profile image
Poppyg16 in reply to AllthatGlitters

I’m not sure who decided! It just said that my health records had been reviewed in the letter they sent with the Covid tests. I asked my gp why I had the letter and they couldn’t say exactly which condition had triggered it but I have also had 2 bouts of sepsis with month long stays in hospital and breast cancer treatment in the last few years. If you haven’t had a letter maybe try asking for advice at your local vaccination centre like I did. I haven’t had a reminder this autumn but they said I fitted the criteria and gave me and my husband a booster there and then. It was out of character for me to be so pushy and I felt a bit cheeky asking but I’m now glad I did. Again I think endo sufferers are overlooked as so few apart from us going through it know how seriously it takes a toll on our health. If it’s not to personal a question has anyone ever suggested to you the link between endo and developing fibromyalgia. My gp said there is only so much our bodies can take of long term chronic conditions until they really struggle. Also I have read that if you have endo then the likelihood of developing fibro is much higher than normal. I really feel we all deserve to have a holistic approach to our conditions as reading posts on this forum so many have other conditions and don’t even get me started on the lack of mental health support there is for us all. Sorry about that little rant but this forum is the first I’ve ever been brave enough to join and it breaks my heart daily to read the posts of all these brave people who are missing out and waiting years for much needed help.

It sounds like you would benefit if you want boosters as you will know yourself any infection or virus with fibro and cfs sets us back even more. I wish you all good luck and fingers crossed for a flu and Covid free winter.

All my good wishes to you

Poppy

AllthatGlitters profile image
AllthatGlitters in reply to Poppyg16

Hi Poppy no it’s not a personal question 😃I have thought myself with having fibro and CFS alongside endo and adeno there must be some link, I read a few people have these conditions. No medical professionals have ever said to me about the link. Well done on you for standing up for yourself & I am also cheeky when I want something if I know it’s going to help my health, I had covid after then jabs and it went straight to my chest so bad I not been vaccinated it would have been worse for me. To what extent I’m not sure. Every day is a battle isn’t it, trying to stay well, I’m actually feeling pretty exhausted at the moment, just had a long period & I am having surgery in January so I need to keep myself as well as I can. How are you today? Like you I would be lost without this forum. Nobody else understands not even some of my family elements which is sad however I have a great husband who looks after me xx

Poppyg16 profile image
Poppyg16 in reply to AllthatGlitters

Hi, All that glitters. Sorry to hear you are so exhausted just now, I don’t think most people understand the difference between very tired and totally fatigued. I don’t know about you but my energy levels at their best are being able to get out the house about once a week for a few hours. I’ve been planning each day this week to get out, especially over the last two days when the weather has been brighter where I live. I just go stir crazy stuck inside so much, I used to love very long walks in the countryside. These conditions take so much from us sometimes. However I’ve not managed to get out yet as I’m in a fibro flare as well as the daily endo pain, and know when not to push things. I’m too exhausted even after just a shower most days. I’m going to try again tomorrow as there is a bright sunny fresh day forecast and I just want to get out, move and breathe that fresh air. I suppose for me the plus side is I really appreciate the small stuff and can feel absolutely elated by things that I used to not notice and took for granted. Sorry I’m waffling again. Hope the weather will be good this weekend where you are and that you feel well enough to do something you enjoy. Although all of us on the forum don’t know exactly how it feels for each other going through all these challenges, I think we have a very good understanding and empathy for each other and the support for me too is so valuable as I feel invisible to the world around me on a daily basis. I have made a few connections with some amazing people, like yourself, on this forum. I am too have a fantastic husband who looks after me and has been there on this seemingly never ending journey every step of the way over the last 35 years! I read somewhere that the test of a relationship is sticking together in the bad times as the good times are easy. To have found my person I feel blessed.

Take care and be kind to yourself

Poppy x

CrochetCrayola profile image
CrochetCrayola

is cfs and fibro a common condition linked with endo? I keep wondering if I have it but no idea how it’s diagnosed

AllthatGlitters profile image
AllthatGlitters in reply to CrochetCrayola

I was diagnosed with my symptoms over several years, took me from teenage years to my 30s for a diagnosis, no tests, just me explaining how I feel to the GP xx

Koko35 profile image
Koko35 in reply to CrochetCrayola

I am diagnosed with chronic fatigue, fibro and Ehlers Danlos Syndrome as well as Endo, I think once you have one thing you seem to get more diagnosis's. Probably no research done on this as per usual..

Koko35 profile image
Koko35

Funnily enough I've just got over tonsilitis and covid, and my endo symptoms had actually not been so bad the previous 4 months. This month has been horrendous and I wondered the same. The pain and swelling in my abdomen and fainting. It must have an affect when you think it's inflammation when you have tonsilitis etc it must aggravate the endo? Only guessing but in the same position at mo

CrochetCrayola profile image
CrochetCrayola in reply to Koko35

Thanks for replying and yea makes sense about the inflammation. Hope you feel as well as you can soon xx

Koko35 profile image
Koko35 in reply to CrochetCrayola

Thank you and hope you do too xx

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