Options for treatment that have worked well - Endometriosis UK

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Options for treatment that have worked well

arielseamermaid profile image
3 Replies

Hi,

I'm really struggling at the moment. I was diagnosed with severe Endo never told a stage but I'm guessing it's 3/4 in January this year during a lap to remove a dermoid cyst. No Endo was removed. The dermoid cyst turned out to have Strumal carcinoid cells which luckily turned out to be benign but the consultant still decided to do another lap in April to remove my right ovary to be sure. No Endo removed in this lap either.

My Endo diagnosis was a complete surprise and I really had no idea that it might have it, I didn't really know what it was... I know that I am very lucky as considering the severity I do have not many symptoms as I can see some ladies on here have struggles everyday.

Since Jan and my Endo diagnosis the consultant put me on Cerazette. Cerazette has helped a bit.. Basically before the 1st/2nd day of my period I would be in so much pain I would need to take high strength naproxen (paracetamol allergy) and now I only get mild pains every couple of weeks so more often but less pain. I'm also pretty much bleeding on and off every other week but it's not like a normal period lighter and longer. The pain is bearable annoying but I am a sucker for punishment and really try not to take many painkillers as I'm allergic to paracetamol and know that ibuprofen and naproxen can cause upper GI problems if used too much.

My question is have anyone's periods eventually stopped after being on mini pill for 9 months? If not is it working if it's reduced the pain but I'm bleeding more?

I have an apt with an Endo nurse specialist on Friday next week, to be honest I really do not want another op for quite a while 2 in one year has knocked me for 6. What are my other options has anyone had a good experience with another mini pill for stopping periods altogether or are they all pretty much the same?

I've also been working closer and closer to full Endo diet in the 5 months and have just in the last week eliminated refined sugar, soy and wheat from my diet, I'm already dairy, red meat, alcohol and caffeine free (bar green tea). I do yoga about 4/5 times a week, vinyasa on good days and restorative on bad and when I feel really great I try to include some body weight exercises.

Any advice would be really appreciated. I am happy to continue on the pill or another if it works but I really think that if I can avoid surgery it will be better. I don't plan on having children and I'm well knowledged about the adhesion risks that surgery can cause in itself.

Thanks :)

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arielseamermaid
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3 Replies

The thing with these drugs is that it's about quality of life, so only you really know if how things are now is better overall than how things were before. I have been on cerazette for 10 weeks (after 5 months of decapeptyl and then a few weeks of norethisterone). I had 3 heavy bleeds in the first 6 weeks but when my period would have been due this month I just had spotting. I am still getting pain with it but I can manage it with mefenamic acid/diclofenac/co-codamol (I take these together) and have pain at a level I can cope with at home which at the moment is the priority for me. I hate the cerazette, it makes me feel incredibly brittle emotionally but I couldn't manage without it.

gem1092 profile image
gem1092

Can i ask if the diet has helped?

arielseamermaid profile image
arielseamermaid in reply to gem1092

Hi Gem, the diet has given me more energy and bowel movements (sorry TMI) have definitely improved. I only have to take an ibuprofen on the days when I do get pain which isn't that often whereas before I would need a stronger painkiller. I went on holiday a few weeks back and decided to try having some ice cream and I was in a lot of pain the next day and had headaches and fatigue for a few days afterwards. I'm very strict most of the time but I will allow myself a treat every now and then but it's normally only a vegan cake to keep me sane. As I'm mostly plant based I also find that I don't have that overly full feeling after meals which is something that I didn't enjoy.

I cannot recommend yoga & mediation enough though I think that has done wonders for me, I think the yoga & meditation combination makes the diet easier as the whole wellness lifestyle is leaned towards a whole package of healthy living.

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