Covid Vaccination : Hi, just wanting to... - Endometriosis UK

Endometriosis UK

58,157 members46,255 posts

Covid Vaccination

Endo766 profile image

Hi, just wanting to know everyone’s experience’s and feelings regarding the Covid vaccination.

My endometriosis and Adenomyosis are, for me, finally at a manageable level and I am reluctant to have the vaccine in fear of upsetting my current regime. I work in healthcare and have worked during covid. I’ve cared for individual’s and direct family members with Covid and contracting Covid does not scare me as much as any change to my cycle/regime/condition.

Am I alone in feeling like this?

Thanks for reading 😊

38 Replies

I can understand your feelings, although I decided to go ahead with the vaccine. I'm currently living with elderly parents and didn't feel right about not having the protection whilst being in close proximity to them. My experience of the vaccine is that they did cause a bit of short term disruption, in that I had a much longer gap between periods which made me a bit edgy. And then I had a much longer than normal period (light spotting here and there for a few weeks followed by a heavier than normal period). Things have gone back to normal now though. I did feel under the weather for a couple of days after the second vaccine, but nothing awful. I think having the vaccine or not is a personal decision and needs to be respected, but as someone who was also nervous as to what it would mean for my cycle, it hasn't been terrible for me. That said, I think that once you've lived with endometriosis pain for a while, nothing else feels so bad, don't you think. I also wanted to say well done and thank you for the care you've given to others during this time. X

Endo766 profile image
Endo766 in reply to Washington1

Thank you for your comment, it’s much appreciated

Washington1 profile image
Washington1 in reply to Endo766

Just thought to let you know that I had the Moderna vaccines.

I have had two doses of the Pfizer with no endo or cycle related side effects. I also wasn’t so much concerned about catching covid myself as I was about spreading it, the vaccine reducing the risk of that was a big selling point as my husband works in emergency healthcare and we have vulnerable family members. I appreciate it’s a difficult decision when you’re in pain though and your concerns are completely valid. Hopefully you’ll get some more experiences shared here to help you build a balanced picture.

Endo766 profile image
Endo766 in reply to Blue_Sky12

Thank you for your comment, it’s much appreciated

I've had both vaccines - and it's not caused any flare ups or additional issues x

Endo766 profile image
Endo766 in reply to EndoSuckss

Thank you for your comment, it’s much appreciated

I have endometriosis and adenomyosis & had 2 of the pfizer, didn’t cause any issues for me, I can’t wait to get the third one 🥰

Thank you for your comment, it’s much appreciated

I had 2 Pfizer, I had reactions to both, but still glad I had them, won’t be having the booster though xx

My experience was similar. This is actually what led me to go back to my GP regarding endo. I won’t be having a booster as well xx

I don’t blame you Jackie, awful isn’t it xx

Hi, I had 2 Pfizer vaccinations and didn’t have a problem. Hopefully I’ll be able to say the same about the booster 🤞

Thank you for your comment, it’s much appreciated

I have had both vaccines (pfizer) it didn’t change anything. But I had covid last week and my period this week. I’ve had quite bad back pains which I don’t usually get around my period. It’s usually other places but it seems this period it’s other places and my lower back. I don’t know if it’s covid that’s caused a change in my pain or if it’s just the after affects/fatigue from covid. Either way, I felt quite poorly with covid so would hate to think what I’d have been like without the vaccines so I’d definitely recommend it as I didn’t think I’d get so poorly with it x

Thank you for your comment, it’s much appreciated

I have endometriosis and adenomyosis and had two dosis of the Pfizer. It didn’t cause any issues for me and I am so glad I had it. At the beginning I wasnt worried about getting Covid but more worried about spreading it, as I have very vulnerable relatives. However, having seen a 38 year old colleague been in ICU because of Covid and one of my best friends had her life completely changed because of long Covid and neurological damage at the age of 40, I cannot wait to have the booster now! It is a personal decision and I know how hard living with endo and adenomyosis is, so totally normal to be scared of anything changing your cycles or causing a flare-up. Thank you for the care you have given to others during this time. X

Thank you for your comment, it’s much appreciated

Hi, I has both astrazenica and have had nothing but trouble since. I had got my fatigue under control with endo and adeno and have not been right since. Will not be getting the booster for sure as need to get myself up and running again. Wishing you best of luck

Endo766 profile image
Endo766 in reply to Bespp

Thank you for your comment, it’s much appreciated

I had astrazeneca in March and from there the endometriosis got worse, I don't know if it was a coincidence! but to date I have not been able to return to my work☹️

I am not having the vaccines , for me the risk of side effects from the vaccines are higher than than any complications from covid , I have been battling so many health problems for many years and like you I do not want to jeopardize where I'm at , I'll take my chances , best wishes to you.

I’ve had double pfizer. My first period after the first dose was heavier than usual but that could be conincidence. No changes at all after the second dose and I didn’t experience any endo flare ups outside of my periods either

Had both AZ shots… my first just as I was due to ovulate, I felt really grim for a day and a bit rough for a couple more and didn’t ovulate, my period after was short and light. Second shot, no side effects. Personally I’m far more worried about the effect covid could have on me vs the vaccination. My brother has had long covid since March 2020, it’s been awful and still is. My partner works with vulnerable people too, so for me I felt it was necessary even if I had a week of not feeling my best after the first jab. It’s an odd situation to be in, a deeply personal whilst very social decision. I’m glad it’s not mandatory to have a jab but also glad enough people have had them that we’re not still in the darkest of days with covid (although clearly it’s not over yet either). Good luck with your decision, take care x

Here is a link about side effects from the vaccines, scroll towards the bottom!

nhsinform.scot/covid-19-vac...

Nobody in the medical profession spoke to my mum about side effects for the AstraZeneca, I wasn't aware somebody had give it her until after when it was too late :-( I'd told her about side effects but she wanted to hear it from the professionals!

She's in hospital now with Inflamed Heart and Capillary Leak Syndrome... Which can lead to Kidney failure, Stroke & Heart failure

They are hydrating her on an IV Drip, testing her blood constantly and giving her Oxygen to raise her oxygen levels in her blood!

Blood Clots

Capillary leak syndrome

Heart inflammation

Period problems and unexpected vaginal bleeding

Are all common side effects for the AstraZeneca, mum hasn't suffered vaginal bleeding but she's had hysterectomy.

Mum took Echinacea to keep her respiratory immune system strong, a well known remedy! Much safer than having the AstraZeneca

A lot of people (definitely not on here) would read your message and think "how selfish" like they always do. But as someone who is also being dealt the ugly blows by adeno (no one has said endo to me yet, and if I'm this wasted with adeno alone I don't even want to imagine what it would feel like living with both monsters) I totally understand your pains and the choice of rather having Covid than this monster. All I can say is, thank you so much for the work you are doing helping and saving others. The decision about vaccine is a personal choice but please just do your very best to keep yourself safe. Personally, my adeno wasn't giving me any respite at all so I felt I had nothing to lose taking the vaccine. If anything, it should keep another monster (Covid) at bay (so they told us ☹️). So I took the vaccine. It was the Pfizer one and I felt absolutely nothing from the first and second jabs in terms of any side effects whatsoever. It didn't upset anything, but may be because I'm already at the extreme of upset 😃Best wishes, whatever you choose to do xx

I have endometriosis, adenomyosis and hydrosalpinx of the left Fallopian tube. I’m 38 and have had both Pfizer vaccines and also the booster vaccine, I didn’t get any cycle related symptoms let alone any side effects from 3 vaccines, other than an achey arm. I didn’t get any flu like symptoms, nothing. I think sometimes it can be psychosomatic, if you worry you’ll get side effects, you’ll get side effects, stress as we know can affect our cycles, so if you are stressing about it, it might not be a good idea to rush into getting it as you may then notice a change in your cycle. I would take some deep breaths and time, do a bit more research and then see how you feel and go for it when you feel comfortable doing so. Good luck & all the best.

I had extreme swelling in my arm, delayed hives and trouble breathing, also neuropathy and extreme heavy bleeding xx

Hey Endo766, totally understand your concern, especially when you finally have your symptoms under control. I have severe endo (on my bowel), and had both Moderna injections and felt no cycle related side effects. Obviously it’s different for everyone so totally do what you feel is best for you xx

Hi, had both vaccines and didn't cause flare ups but I'm in the thick of my condition and none of it is manageable at the moment. Can I ask you how you're managing your symptoms? I can't stand the pain and don't know what to do with myself...I work 12 hour days in palliative care and we have the same diagnosis .. sorry if I'm sounding weird here lol little bit desperate to have a normal day. 😅

Endo766 profile image
Endo766 in reply to Asheljaes

Thank you for your comment, it’s much appreciated. I changed my diet (loads on the website but it's mainly healthy carbs and high protien), reduced alcohol intake, go for long walks and take pain relief in anticipation of a flare up so I don't get caught off-guard - nothing too strong, 400mg Ibuprofen. Positive mindset and distractions work. Also having a busy calendar, nothing that is too overwhelming but activates that I don't want to miss so I find I push myself a little more. I also downloaded some meditation apps and audible from Amazon so when I can't sleep a good audio book does the job. I am determined that it won't rule my life and I've come to terms with living with it and educated the people around me to understand the condition and lower their expectations of me for social events.

I have had surgery, hormone treatments and a late pregnancy following surgery. Nothing helped. I have also been offered a hysterectomy several times - just felt that was something I didn't want to go through re recovery and having small children and a demanding job. Would rather stick with what is working currently for me - which made me ask the initial question.

Good luck x

Vps1980 profile image
Vps1980 in reply to Endo766

I’m hoping the booster doesn’t become mandatory like in other countries xx

My endometriosis was sort of discovered because of the vaccination. Started to have spotting a actual spots on my face 2 days after receiving it, and caused terrible pain for 2 days, then brownish discharge between periods. 2 nd vaccine was OK. (Pfizer)

Vps1980 profile image
Vps1980 in reply to kismelo

How did they discover it? Xx

I had the second dose back in August and I haven't suffered any kind of adverse effects regarding Endo or Adeno.

I have adeno and endo, and have had both Pfizer vaccines. After the first I had the worst period I've had in a long time, extra long, extra painful, basically couldn't function for 10 days. And after the second one I completely missed a period but was on zoladex for a few months at that point. Both times periods returned to my "normal" the next month.

I have 3 autoimmune conditions: asthma Sjogrens and endo. I work in health care. I had 2 doses of Pfizer in January and February. No issues other than pain at injection site that went away. 24 hour fever and chills with the second dose then was fine after. I got a booster/3rd shot in September and my annual flu shot. Again no issues other than feeling a little sluggish for a day. But with severe endometriosis and Sjogrens with joint pain it was really nothing compared to what I usually go through. When I was younger I might not have gotten the vaccine but my situation is different now. It’s really a personal decision. For me I was afraid I would die if I got Covid due to my asthma and other conditions. I have a 5 year old and want to be alive and healthy for him. Best of health to you.

Hi

I am also concerned that the vaccines will make symptoms worse (I’ve had them for over a year now). I want to wait for my diagnostic laparoscopy or a diagnosis before I receive the vaccine but this decision has also come with a lot of stress! You need to do what’s right for you just like everyone who has taken the vaccine, they have done what is right for them. X

You may also like...