post surgery issues: I have fought for... - Endometriosis UK

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post surgery issues

EndoQueen2895 profile image
16 Replies

I have fought for endometriosis to be diagnosed and finally got diagnosed 13 years later in January. I had a laparoscopy. They found stage 2 endometriosis and the reason for my pain (I was on all fours) was because the tissue was sticking my womb to my right pelvic wall. After the surgery I had two normal periods, no pain for the first time in 13 years!! Until, this month has come. I was two days late, symptoms of early pregnancy, little clots and a lot of pain. I am wondering if anyone has any similar experiences and also any treatment they had? I have started to take hormone balance vitamins and I am wondering if this is what the trigger is or has the endometriosis come back? These are the hormone balance vitamins I have been taking. Any help or advice greatly appreciated x x

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EndoQueen2895
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Moon_maiden profile image
Moon_maiden

Hi

Although no one could say for sure as there isn’t anywhere nearly enough info on Endo you should be getting those vitamins and minerals via your food anyway, I would think it unlikely. They know Endo can return, they may not have seen every bit of Endo when you had your operation, did they check all over? It could be an infection or something else as well.

Are you still under Gynae? If you are I’d contact the secretary and get an appointment to discuss or if need be see GP.

🤞 it’s not Endo and something much easier to get rid off.

EndoQueen2895 profile image
EndoQueen2895 in reply toMoon_maiden

Thank you for your reply!! I was examined everywhere I was under for 3 hours and I was fortunate enough that my dr showed me the images they had got during surgery of the tissues. I am no longer under gynae I will go back to my GP. An infection would also make sense too. Thank you x x

Moon_maiden profile image
Moon_maiden in reply toEndoQueen2895

Sounds like they had a really good look🙂

Let us know how you get on with GP.

bluebug profile image
bluebug

Hormone balancing vitamins is just marketing so you are generating what some doctors and scientists call "expensive urine".

There are situations caused by genetics, illnesses, skin colour and/or lifestyle where you won't be able to get enough of a specific vitamin and/or specific mineral but you should be tested for that deficiency. Then you should just take that specific vitamin and/or mineral that you are deficient in plus one/two complementary others to get your levels up to optimum.

The only common vitamin lots of people in the UK are insufficient in and you can't get from food is vitamin D. However most people in the UK have insufficient amounts between October to April, and that's when they need to supplement. From April to October you should be able to get enough from being outside. However if you don't get outside in the sun in the day and you are getting symptoms then you need to get tested.

Another mineral that menstruating/pregnant women particularly those with heavy menstrual bleeding can be deficient in is iron. However as there are genetic conditions which means you can store excess iron again you need to get tested before supplementing.

EndoQueen2895 profile image
EndoQueen2895 in reply tobluebug

Thank you, so I need tests before supplementing, I have stopped the hormone vitamins until I speak with my dr x

bluebug profile image
bluebug in reply toEndoQueen2895

If you aren't having any symptoms or signs of vitamin and/or mineral deficiency then you don't need to speak to a doctor about it.

Just talk to a doctor about your endo issues and whether you are have an infection.

BTW The NHS has genetic advice about vitamin D here:

nhs.uk/conditions/vitamins-...

EndoQueen2895 profile image
EndoQueen2895 in reply tobluebug

I had bloods and it said I was vitamin D deficient a few months back, but I knew I had vitamin D in my hormone supplement. Where would the infection be would it be urine or something? Sorry this is all still very new to me! X

bluebug profile image
bluebug in reply toEndoQueen2895

Who did the bloods?

If it was your GP or a consultant they should have told you how much vitamin D to supplement with. They would not tell you to take a multivitamin, which is what your "hormone balancing" vitamins are. They would tell you just to supplement with a vitamin D supplement which you can buy from a pharmacy or health food store.

In regards to the infection - it hasn't been proven you have one yet. So you need to see your GP to confirm if you have one or not.

EndoQueen2895 profile image
EndoQueen2895 in reply tobluebug

I had bloods done with the GP. It said I was deficient in Vitamin D. I explained I was already taking the hormone vitamins. He said there was enough in the vitamins to help my vitamin D levels be where needed. Would it be a urine infection tho or would it be Endo related?

bluebug profile image
bluebug in reply toEndoQueen2895

Did you get the test results? I mean the actual number on the test?

If you did then as you know your nearest NHS Trusts Google the "[name of a trust] vitamin D treatment guidelines" e.g. "north bristol NHS trust vitamin D treatment guidelines". (Without the quotes)

You should get a document where you can see that if your vitamin D levels is <25, 25 -50 (or whatever numbers used) what amount of vitamin D you should take.

The amount will be in international units or IU.

Unfortunately due to the large number of people in the UK who have vitamin D levels above 25 but lower than the optimal amount GPs leave patients to get on with it.

If your number is lower than 20 (or 25 if that's the lowest number on the document) go to the GP with the document and ask him/her why they aren't following the protocol. As they should be prescribing you a loading dose.

Btw you aren't new to this. You are just confused. You may have an infection but you don't know until you ask your GP. However you do know your vitamin D levels is too low and you need to get it up.

EndoQueen2895 profile image
EndoQueen2895 in reply tobluebug

Thank you so much for your help and empathy

BloomingMarvellous profile image
BloomingMarvellous

The supplement has nothing in it that you wouldn’t ordinarily get from a very ordinary diet so it’s what would be known as a coincidental occurrence. Infection or flare would be my hazard.

If you want more information with endo and nutrition a good read is Katie Edmond’s Heal Endo and she has a recipe book too.

EndoQueen2895 profile image
EndoQueen2895 in reply toBloomingMarvellous

Amazing thank you, I have drs app 24th July, so I will ask these things. Thanks

Cia12 profile image
Cia12

I Also had my surgery in January and I've had some pain and swelling since. Have you been put on any hormonal medication? I've been on dienogest since May And it seems to have reduced the pain, But it's not totally gone. I had a follow-up with my surgeon recently and he suggested an MRI scan just to check, but he said he would be extremely surprised if the Endo was back that quickly. He thinks it's probably more caused by fluid in the area where the Endo was taken from. So that reassured me! I Would go back to your surgeon if you can, or speak to your GP

EndoQueen2895 profile image
EndoQueen2895 in reply toCia12

Hi! I’ve not even had a follow up appointment since surgery, I’ve not had any hormonal medications prescribed either, this is why I went on the supplements. I will be speaking to dr today. Hopefully I am still under gynae x x x

Cia12 profile image
Cia12

Also, my surgeon told me to take vitamin d so I don't think that has anything to do with it. And when I asked him about other supplements he said I can take anything that makes me feel better! So I don't think the supplements would have anything to do with it, but worth stopping them and then asking about it just in case. Hoping you're like me and it's probably nothing to worry about, but worth following up

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