been waiting for my scan, finally it came yesterday, the main reason for the scan was to check on a large cyst that they found 3 months ago, that they suspected was a haemorragic or endometrioma - quick recap in case you haven't come across me before:
heavy bleeding, contraction like pain when on period, periods became very irregular, left lower pelvic dull, tugging pain everyday, with sharp, stabbing bursts of pain from 30 secs to several hours, lower left back ache sometimes going down leg, plus all the other things that go with it, tiredness, unable to carry heavy stuff, driving is hard, walking or even standing some days is hard.
first scan last apr (11) small fibroid, cysts, very thickened lining
july 11 - biopsy on lining, hysterroscopy done, mirena coil fitted
oct 11 - was told to persevere with mirena even though causing major problems, and lose weight
mar 12 - mri, found large cyst, still have the fibroid, report says it is on the fundus and indenting the womb, says womb is anteverted and retroflexed :/ no idea what that means
yesterday at my scan she literally scanned the top of my belly for about 15 secs, then did the wand thing, which was about 30 secs, told me the cyst has gone (which is good) and goodbye! i was gobsmacked, but just ended up walking out anyway, i thought they would have used the time to completely check everything again, they know i'm having this trouble, and that now i'm having bowel trouble, i wish i'd said something like but i just felt like i was wasting her time, plus she was sat with the wand in her hand (and sorry if too much info) but it had blood on it, as i was on my period, which i know they take no notice off but it was a big issue for me.
i just think they should've measured the thickness of the lining again at least, to see if the mirena has reduced it as its meant to, i dont think it has as i;m still bleeding so much.
managed to see my gp this morning, she said although quick there was a good report, ok fair enough :/ she said they wont do the lap yet, until my bmi is under 30, thats a long way off but she said she will write to them when its get to 35 - she is going to ask them to remove the mirena and consider the endometrial ablation, so fingers crossed they will do that.
feel a bit happier than i did yesterday, just get fed up with the hospital looking at me like i'm wasting their time, i dont want to be there anymore than they want me there, but i believe that the pain and symptoms i have is not everyday normal - hope everyone is having a good day xxx
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worth71
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I'm so sorry that you feel you've been left down. I've seen quite a few of your posts and knew you were waiting for a scan and have been suffering so felt bad as soon as I saw you had posted on here.
I know its frustrating but try to focus on the positive, it was good news. Although it probably doesn't feel like it, you would probably be suffering even more if the cyst was still there (I know I was when I had one!). I had a repeat scan that showed a cyst had gone and thankfully the doctors continued treating me the same way regardless as endo doesnt usually show on scans, so hopefully everything will work out for you.
I don't know if this is any help, but you can choose where you have treatment on the NHS, and from what I'm aware you don't need to be under 30 bmi for a lap in all hospitals, definitely not at mine anyway as the pre-op nurse told me she only needs to do something if someone has a bmi above 40 (she didn't go into detail on what she then has to do though?!). Obviously this is your health, and it is a general ane so anything that makes it safer for you is very good thing, just frustrating!
thank you for your kind words - and yes it was mixed emotions yesterday, as like you say its a relief that the cyst had gone, and not got bigger to cause even more problems, but also if it was still there then it would've given me another reason to get referred back to gynae, i suppose also with the ultrasound giving my pelvis a clean bill of health other than issue mentioned, i began to finally think that i might actually have endo, its the first time i've really thought it, as all along i've been hoping for other reasons for the pain, and that they could be resolved, i've always told myself i won't have endo, but hey ho, even that is not a given yet - in the mean time i will keep working on my weight, my bmi is 44, it used to be 50 and that was only in march so am thinking by autumn i could be below 40, my gp thinks they will do the lap then and hopefully gynae will take this mirena out and i can have the ablation to deal with that side of things.
thank you again - coming onto this site has saved my sanity, and also makes me realise that i could be a lot worse but i'm thankful to you all xxx
A big positive from your query is the result of your scan which is excellent news. But I can understand your disappointment at how your ultrasound scan appointment went. For many of us with endo we always hope that each hospital visit will bring new treatment options or the possibility of different medication being prescribed. And because of this eternal hope we look forward optimistically to the date of the appointment. So, of course, when you are ushered in and out within such a short time you do feel deflated. I think dealing with hospital visits takes time and experience with regards to knowing how to get the most from your brief time with the professionals.
In this case your appointment gave you the best outcome but in future I wouldnt be afraid to stay in the clinic room a while longer and make the most of the chance to ask all the questions going round in your head! After all you have probably waited a while for the actual appointment day to come round and with it the perfect opportunity to speak directly to the consultant nurse.
Another thing to remember is that the ladies who do the scan are only acting on the instructions they've been given by the consultants, and it's not their job to interpret what they see, so although the lady who did your scan didn't say anything, she may well have measured the thickness of your womb lining without telling you.
I am lucky (?) in that I've been having at least 6 monthly scans for the last 10 years or so, so all of the ladies are intimately acquainted!! with me and I with them (although not in quite the same way, obviously!) and they just tell me what they're finding as they go along, because we're chatting anyway. As I said, it's not their job to interpret, but I am sure that if you ask questions about what they're seeing, they will be only too pleased to show you on the screen what's going on.
I hope you get it all resolved soon, and well done on your progress since March!
hi - yes i understand that the lady doing the scan was instructed to check the cyst, and that is what she has done, some do tell some info at time of scan some don't, she did apparently measure the lining but my gp did not tell me what it measured.
i think it was just my emotions running high the other day, now i'm back to my accepting self, and know nothing will change for a good while yet, i am still focused in my weight loss, its just hard sometimes when you feel so rotton, trying to find the energy to do things, or get past the pain, as all women on here are aware of - my gp has given me amitriptyline, said it will help me sleep and help with pain, i've not taken them yet, as i'm rubbish with tablets, always get side effects, but after the night i've just had maybe i will try on the wkend and see how i go xx
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