I’ve just come back from my first gynaecology appointment that I’ve been waiting 18months for really deflated and could do with some advice please…
I’ve had symptoms that I started paying attention to in 2020 that my GP suspected was Endometriosis from my symptoms, sent me for an ultrasound in 2021 which everything looked normal and as it can’t be diagnosed this way, referred me to a Gynaecologist. My symptoms are classic and I’m so sure that’s what it is, I’ve had IBS as a teen and know it’s nothing like that. I wouldn’t say I have it severely to the stage my life is horrendously effected by it, but I’m aware I’ve had symptoms over 3 years and it’s likely to get worse, so surely the sooner the better in diagnosis?
the gynaecologist was really dismissive! And frowned when I said that my GP suggested endo, and asked me why I think it’s that? She was very against me getting diagnosed with a lap (I know it’s risky), and suggested we could try a few months of hormones. She also asked why I’ve waited so long if I’ve had symptoms since 2020!!! I’ve been waiting around 18months for this appointment!! And did she forget 2020 was covid?
I was on various pills for 7 years from teenage-hood and it really affected my moods and I ended up break-through bleeding constantly on the pill so a gynaecologist took me off hormones. I’m very nervous to try this method without a diagnosis.
The gynaecologist was really unhelpful and I’d rather be referred elsewhere but also the thought of waiting another 18 months is annoying.
Should I just push for a lap or see if my symptoms worsen in the future and manage my suspected endo as is?
Any advice please?
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Labyrinth8924
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Endo can be diagnosed via a transvaginal ultrasound or by an MRI it is for millions of women, but not always sometimes if you have the scan done by a non specialist or inexperienced sonographer then they can miss it. They could also miss it if it's just a very tiny bit, but if it's a tiny bit then a lap isn't usually advised.
I would suggest getting a scan done by an expert who would be much less likely to miss anything. You could try the hormone root of just taking a progesterone only pill or having a coil put in, if the pain stops when the period stops it's very likely to be endo but you would only need to do that for a few months, I can't see why you would need to wait 18 months, that seems much too long.
I would be careful about going for a lap right away, I have only had two ops but I cannot have anymore even though my endo is really severe because the scarring I have internally is so bad. Every time you have a lap you get adhesions , these cause the same symtoms as endo and can really damage you internally.
I know some women who have had loads of surgey (my sister has had 7 ops) but they are usually in a lot of pain form the adhesions at that point. Having said that if you catch the endo early that is always much better.
Maybe try for an MRI or a better TVultrasound and get a second opinon form another gynae.
I didn’t realise lap can cause problems due to scarring, I had laparoscopy’s years ago, can’t remember if 1 or 2 as had that many different things over the years, I’m now through menopause and have constant pelvic and all over abs pains, just wondering if it could be due to scarring, but it was over 29 years ago I had laparoscopy. Had a bleed bowel end with pain so sent for ultrasound which showed cystic appearance of the endometrium and a simple cyst which is nothing to worry they said about they said, then April this year I had a 3 day bowel haemorrhage bad enough to go to a & e and in awful pain which Iv been in since October been waiting for gyny appointment since Jan after my internal external ultrasounds, had colonoscopies and gastrophy and clear apart from gastric polyps which they said wouldn’t cause probs, now I’m anaemic positive fit test and stool test so here we go again so fed up now
It can, if the op is done badly or you are a person who is incinled to scarring it can cause really bad adhesions which cause as much pain as the endo. Endo also usually grows back quite afer an excision but it would be weird for it to grow back years and years after having it removed. It usually gows back withing a year or two. HRT can make it come back though, I know a lot of women who have had it triggered and restarted by that. I think the adhesions would cause pain from a year or two after the op too so it seems a bit strange. Get and MRI and see what it shows.
Thank you I didn’t go for the ablastation as nee at the time then went into early menopause due to thyroid so mine hasn’t been taken away, see where this next referral takes me now
I started back on hormone pill which really helped my symptoms and surprisingly actually helped my mood as I get terrible anxiety leading up to a period so with them being stopped it’s helped. My gynaecologist sent me for an MRI and luckily I was diagnosed through this however I have stage 4 so not sure if other stages can be diagnosed. I think it would be worth pushing for as you will be waiting months for a lap anyway. At least this can rule out other things while your waiting
I would push for a mri scan with dye, this is what I did, my gynaecologist was the same very dismissive, I had a mri scan and they have found endometriosis on my bowel and pelvic area
Thank very much for reply, could I ask if your bleed from bowel was after menopause or before please, absolutely awful having to deal with so called professionals who are dismissive instead of open to exploring investigations to find reasons and causes why x
keep pushing for a lap. Every test I had came back as no sign of endo. They offered the lap and found a huge amount and was able to remove it. Sadly 2.5 years later I am waiting for another one but it made a huge difference to start with. You know your body and don’t be disheartened. You could always ask to see a diff consultant as well.
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