Endometriosis UK
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HELP! Advice needed #endowarrior

Hi everyone :-)

I had my second lap last Wednesday and was finally diagnosed with endometriosis. After years of pain and not many people believing me I finally have some answers. But now I'm worried about the next steps. They said I have endo everywhere including on my bladder. They said they got most of it but I don't know the details as my follow up is in 4-5 weeks from now. My gynaecologist did mention she thinks I should have the prostap injections but does anyone have experience with these?? I'm 25 in a stable relationship and want kids like most 25 year olds. We're not ready just yet to start trying but I'm worried the Prostap injections will have side effects which will affect me being able to have babies (if I am able to anyway that is).

If anyone has any advice on the next steps I'd appreciate it :-) thank you all in advance xxx

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Why didn't they excise all of it? Is further surgery on the cards? Are you being treated in an accredited BSGE specialist Endo centre?

GnRh is a powerful medication and it's other use is cancer therapy. I suggest you google and read the PIL and weigh up the pros and cons. It's worth requesting a baseline bone density scan in case it does work and you want to stay on it for a while. This is best practice but often overlooked.

I had the equivalent zoladex. It violently didn't work for me, but I have deep RV Endo which is an Endo type that tends to be hormone treatment resistant anyway as research suggests it can develop the ability to self generate the oestrogens it needs. I'm also often medication intolerant and haven't yet seen anyone else report the range of effects it had on me.

We're all unique and the only way of finding out if you are happy with the risks is to try it and see.

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Hi lovely, all that springs to mind is that they found it on my bladder and maybe it was to dangerous to get all of it? But I haven't had a proper debriefing of what actually happened I feel so out of the loop. Just waiting on my follow up now to get all the unanswered questions I have. I was treated at Salford Royal? And I don't Know if it's endo specialist I feel like a small fish in a big sea at the minute I don't really know what I'm supposed to be asking for or demanding :(

Thanks for your advice I've made a note of all the things you've mentioned xx

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Perhaps ask the consultant secretary to send you the op notes. I found it helpful to read in advance of seeing the consultant, which gave me time to think what questions I wanted to ask.

This is the link to accredited BSGE Endo centres. Severe endo should be treated in one as they operate specially trained multi disciplinary teams. bsge.org.uk/centre/

The is the link to the NHS contract specification for severe endo and why the centres are required. See page 6 google.co.uk/url?sa=t&sourc...

This is a good overview of hormone treatments. They all have unique different side effects by individual down to different pill varieties so recommendations or critique from others tends not to be all that useful.

That said. GnRh as a catergory is by far the most powerful drug and worst thing that I tried side effects wise. And yes, believe it is contraindicated for osteoporosis and arthritis. I would try the coil or progesterone only pills first endometriosis.org/treatments/

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Thanks so much you've been so incredibley helpful!!! Xxx

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Also I've just done a little bit of research and it mentions about bone density. I have osteoporosis in my family my mum / auntie / nan / great auntie have it so maybe this isn't the best route for me :/ xx

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Hi Imogen,

I'm sorry to hear about what you have gone through! It took me 2 years to be diagnosed but luckily only 1 lap!

my recommendations to keep the growth at a lower rate was to have less periods a year. The less periods you have means slower the growth. I take a pill called Yasmin which is meant to be every month but i take it for 3 months straight so i only have about 5 periods a year instead of 6. i had some of my endo, not all, taken away in 2015 and I have been okay since. Although every now and again i do get pain, but nothing like it was before.

I can only have this solution as anything other hormones make me go quite crazy so it will specific for you too as it is so hormone related.

The best advice I can give, is that it is your body and you know it better than anyone else, so do not be afraid to put your foot down. I found that was my most important step in my whole process!

good Luck xxx

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Thanks for your advice. Me too I go crazy on certain pills but I've not tried the Yasmin do you get any other side effects on it? I might go to my GP and ask for that one and see how I get on. Yes I agree! I was supposed to have the coil while I had my lap and I said on the morning of it I didn't want it anymore. It's so hard to know what's best isn't it but I'm glad you've managed to find something that works for you lovely xx

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I haven't had any and i have gone through a few different ones now. I was always on Microgynon but that is quite high in Oestrogen. I then had my lap and found it didnt work too well for me. I also had the implant in my arm which was my biggest mistake! I then went onto Celeste straight after my op and that made me a little crazy but not too bad, I noticed a difference though. I have now been on Yasmin for almost a year i think and it has been the best for me. I have good days and bad days but I have endo and always will so no matter what your hormones will always play up. it has quite a low level of hormones in so worked best for me. You will find something it just depends on your body. I lost weight from Yasmin and had better skin. Before my op I was slim and hardly ever had spots, after my op i put on a lot of weight and my skin was really bad! since Yasmin its been easier to control and my skin has improved and I find it easier to lose weight and balance my hormones out. I asked to be put onto this one because of these issues and found it worked. It could also work for you, but won't know unless you try :) They try to make you stick with it for at least 6 months to a year but if you feel you changing sooner than that then come off it, like I said before you know you and your body better than anyone else!

This link is too the ingredients to Yasmin. medicines.org.uk/emc/medici...

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Thanks so much for all the info lovely! Will defo discuss with my GP and give the link a read :) xxx

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hi. Hope your feeling comfortable after your lap. Was your op done at a bsge centre? I had an op in may and they literally just ran out of time and had to stop as it took three hours longer than they expected so it couldn't all be tackled but it has drastically reduced my pain. I'm having 3 months of prostap whilst everything settles and we get our heads around yet more issues! You should find lots of peoples experience on here ( I'm only a beginner with all this) and you have to go with what you think will work best for your body and circumstances. Have you tried diet changes?

hope your recovery goes well. Xx

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Thanks for your response lovely. What's a bsge center 😩 I'm assuming not because I don't know what that is :( I've been vegan for over 6 months so I don't consume dairy / animal products anyway but this week I've tried a predominately gluten free diet to see if that helps me. I've just posted again because one of my stitches has come loose and looks very red and sore. Went to the doc and they gave me antibiotics but didn't tell me I needed the stitches sorting :/ I just want my follow up straight away so I know what stage it's at and what they actually did :( feel so out of the loop I've got to wait 4/5 weeks! Xxx

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BSGE centres are accredited specialist Endo centres made of multi disciplinary teams. It's because the disease and it's surgery is so complex

The link to the NHS contract specification for severe endo explains why the centres are required. See page 5/6

google.co.uk/url?sa=t&sourc...

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