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Confusing gynae appointment

(5 Posts)
2ndSopranos Thu 18-May-17 14:55:40

I have been suffering from awful periods since my teens and finally have been getting somewhere with getting medical professionals to appreciate my difficulties. I have a lot of symptoms of endometriosis.

Over Christmas I had a scan which showed something that "looked like a fibroid but wasn't a fibroid". In February I went back to the hospital and one of the options I was presented with was hysteroscopy plus mirena. I absolutely, adamantly do not want a mirena. I could also have a diagnostic lap, but at the same time they'd do an endometrial ablation.

I scared myself researching the "fibroid that isn't a fibroid" and went today to ask for the hysteroscopy but no mirena. I was told today that the hysteroscopy wasn't diagnostic; only it was to place the mirena. My letter mentioned endometrial biopsy on the same line as hysteroscopy.

The consultant declared she would put me on tranenxamic acid. I am intolerant to anything relating to ibuprofen. So I was they were back to mirena.

The consultant was confused as to why a lap had been suggested so I mentioned my endometriosis symptoms. She told me endometriosis doesn't cause heavy, painful periods. So it's definitely not endo.

I don't know what to do sad

AttilaTheMeerkat Thu 18-May-17 15:25:48

"The consultant was confused as to why a lap had been suggested so I mentioned my endometriosis symptoms. She told me endometriosis doesn't cause heavy, painful periods"

She said what?. I would certainly query that comment from her because endometriosis certainly is a possible cause of heavy and painful periods.

It sounds like you have been both fobbed off and ignored. I would actually consider complaining to PALS if you saw this person at an NHS hospital unit. I would certainly go to the GP now and insist that you are re-referred to another gynae unit and preferably one in the nearest city to you (particularly if you were referred initially to the local hospital).It is fair to say that some of them are far better than others. You ideally need a specialist endometriosis centre; such places do exist in the UK.

I have also suffered similarly with both heavy and painful periods since my teens and I went many years without a diagnosis and in ignorance. The root cause of my gynae issues was endometriosis.

I have also been recently offered a Mirena and declined it. I also told him that it in itself is not going to remove any endo that is already there.

I would also decline the diagnostic lap because if you have this type of surgery having a diagnostic alone will necessitate going through yet another lap type op. You really do not want any more surgery than you absolutely need and you need someone with a specialist interest in endo along with up to date knowledge of procedures.

This is a good website on endo generally:-

www.endometriosis-uk.org/

GingersHaveSouls Thu 18-May-17 17:41:42

Has she offered the option of endometrial ablation?
I'm getting one next month due to heavy periods.
Attached a link for you to look at
https://www.bupa.co.uk/health-information/directory/e/endometrial-ablation

PollyPerky Thu 18-May-17 18:55:28

This is bonkers.

If they found something on a scan in your womb that looked like a fibroid but wasn't a fibroid they have a duty to investigate further- ideally with a non invasive procedure like a hysteroscopy when they can also do a biopsy.

You need to push for this and ask more questions!

EllenRipley Fri 19-May-17 19:06:13

Endometriosis doesn't cause heavy periods?! What a load of guff, of course it does. You need a hysteroscopy in the first instance, which will be able to identify if you have a fibroid or not and they will do an endometrial biopsy as a matter of course. Insisting that they only do it to implant the coil when you haven't even had a diagnosis is utterly ridiculous and you are under no obligation to have the mirena, which might even end up complicating your symptoms. Endometriosis (and some other gynae conditions) can only be identified by laparoscopy - if it's suspected they should do it but it is worth getting the fibroid issue cleared up first. I had a hysteroscopy after some unexplained bleeding (tho I've had a small fibroid for years)then follow up appts identified a couple of small cysts. I had a CAT scan and then a laparoscopy as due to appearance of cysts and pain I was getting they suspected endo (thankfully there was none, just adhesions from previous c-section). The whole process took a year but once I was in the system and on the consultant's books, they kept scanning and assessing my symptoms (also with CA125 blood test) until we both agreed laparoscopy was last and best resort. I'm in Scotland so NHS procedures might be different here but I would have hoped there are standard protocols for women in this situation (though these may vary dependent on age and symptoms). Either via your GP or consultant, I'd keep pushing for the right kind of tests and don't be fobbed off with hormonal contraception or ablation until you have some kind of diagnosis. Good luck! X

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