What to do?

[Red_Crumb]

Hi everyone,

Had a follow up gyno appointment at the hospital today after a enodmetrioma was found during a ultrasound. i have been given the option to have a laparoscopy or just to have hormone treatment instead. Im not sure what to do as endometriosis hasnt actually be officially diagnosed yet. I have 2 months to decide what i want to do.

 I have been given Tranexamic Acid to help reduce bleeding and Medenamic Acid to help with pain. Does this medication actually work? Anyone had any issues with it/

In too minds of what to do as the nurse i see wasnt very helpful. Is it possible to ask to see someone else for a second opinion?

Any advise is greatly appreciated

Thanks 

[JeanOsborne]

Hi I would advise you have excision with a specialist from the BSGE list, as any meds or hormonal treatment will only mas symptoms. The only way to get rid of endometriosis is with excision surgery. Have a look on the BSGE website and find a specialist centre near you then go back to GP and get a referral to them. If the ultrasound showed a endometrioma then you endometriosis so they cannot refuse. Good luck.

[Pixiemus]

Hi I saw this and wanted to let you know that this site is great for getting advice, it has been sooo useful for me and now its my turn to return some advice I too had an endometrioma found by ultrasound, it was a complex nature and around 6cm. I have recently had a lap to have it removed along with widespread Endo. The only way to offically diagnose Endo is through a diagnostic lap, a lady called Lindle on here is a fountain of knowledge and highly recommend you check out her posts. Each lady with Endo has totally different sets of symptoms, pains and niggles and ultimately I guess its working out if you want to become pain free. I personally started on tri-cycling the pill, as advised by my consultant but it didn't work so I started the chemically induced menopause through prostap and then had a lap to remove everything. It all depends on your symptoms and size of endometrioma as some consultants will not remove a chocolate cyst if it is smaller than 5cm I believe...for your own piece of mind perhaps arrange another appointment to discuss further before seeking a second opinion - I totally understand that its a minefield and really hope that you get the answers you are looking for do you how large it is...?!

x x

[Red_Crumb in reply to Pixiemus]

Im not sure how big it is tbh. I felt like the nurse just wanted to get rid of me..extremely frustrating and didnt really want to answer any of my questions and just wanted me to agree with everything  

[Tazzza]

Hi

I've just been diagnosed with endo and am waiting for a lap - so can't offer much in the way of experience! But I've been on tranexamic acid for about 4 months. It does nothing for the pain but I was told it helps with clotting, so should make things a bit 'cleaner' and should stop any flooding

[Pixiemus]

oooops! I forgot to mention - definitely request an MRI as this will help the consultant to understand more about the nature of the beast as it were it gives a much better picture of what is happening!! And totally agree with Jean's advice above - Good luck x

[Red_Crumb in reply to Pixiemus]

Thank you i did ask about a MRI and the nurse said it is a waste of time having one 

[Pixiemus in reply to Red_Crumb]

you are very welcome no wonder you are frustrated - its your body and totally your right to know what is going on. In which I seriously suggest you take on board jean's advice and as your gp for a referral to an Endo centre so that your treatment and next steps are being managed properly - I too am going through this exact process! X

[Shell1967 in reply to Red_Crumb]

I had an mri last week for a different reason and endometriosis Was found on my ovary sacro ligaments and bladder so it is not a waste of time but ultrasound showed nothing x

[CP17]

I've taken mefenamic acid for pain and found it somewhat helpful, but no better than over-the-counter ibuprofen, so I got the prescription discontinued. Personally, I've found the combination of ibuprofen and a heating pad best for pain. But it can be different for different people.

It certainly sounds like the nurse you saw wasn't taking the time to answer your questions. Definitely frustrating. I agree with others that you have the right to request a referral to a different provider. 

[123sickofbeingsick]

I find mefenamic acid is only slightly helpful and you have to try and take it in advance which is sometimes hard to do if your cycle is irregular!

An MRI is pretty standard when it comes to diagnosing endo so I'm surprised the nurse told you it was useless. Having saidthat , my gyno explained that MRIs cannot effectively be used to diagnose endo because they often don't pick it up. I subsequently read up on MRIs and found that he was correct.

 Laporoscopy is the only way to get a firm diagnosis. My MRI came back as clear for endo and mild adeno but when I had my lap done, they found stage 3 endo and severe adeno. The gyno wasn't surprised at all that nothing had really come up on the MRI, but it is generally the first step they take when it comes to the diagnosis process. Agree with Jean, demand to be referred to an endo specialist!

 

[applebird]

I would have the lap - check it is excision with a specialist - I would presume you would have a pre-op consult with the consultant or at least their reg beforehand...

Then go on the pill or hormone injections to prevent recurrence of Endo after the operation - gives you the best chance of it staying away. 

Mri most commonly used if they either find severe Endo in a lap or suspect it is there due to symptoms/past history, helps to guide a more radical operation than the standard diagnostic lap. 

[Red_Crumb in reply to applebird]

I am currently taking cerazette and have been for about 5 years now. I only started taking it due to a previous ovarian cyst. 

What is excision?? 

[applebird]

endometriosis.org/treatment...

vitalhealth.com/endometrios...

Read those links it will explain the differences between standard laser and excision better than I can.

If you're on the pill and your Endo is causing probs then you really need the surgery to remove what's there as pill won't be effective on its own.