As the title suggests, I've been having really long periods (see: 1+ months), spotting, really heavy bleeding at times, painful cramps and stabbing pains in my vagina, and fatigue. I'm on the POP pill without break so I shouldn't be having any periods at all but since last October they've been really strange. I take Mefenamic acid for the pain but this doesn't help much, and I was given Tranexamic acid to stop my periods which did not work. I have an appointment next Friday 23rd with my GP but they have been totally useless (been dealing with bad periods since I was about 13) so I think I'm going to ask a for a gynae referral. Does anyone else have any experience with this sort of thing?
Fyi, I have had 3 ultrasounds in the past and am under ?endometriosis but now wondering if it could even be adenomyosis as ultrasounds did not show anything for endo.
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itselenax
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It does sound like endometriosis, adenomyosis could also be it, check out endometriomas, fibriods and ovarian cysts. They're all linked.
Just some info endometriosis often will not show up on ultrasound scans, unless extensive and causing adhesions. That doesn't mean yours is insignificant as with most of these conditions the amount of it doesn't correlate with the severity, so for some women they could have a small amount of endometriosis and lots of symptoms.
The only formal diagnosis for Endometriosis is an actual laparoscopy with a specialist. Sounds scary but most of these things can really only be diagnosed and assessed by actually taking a look. Quite often an experienced specialist will remove anything odd and take biopsies all in one operation. General gynae may be a waste of time as they'll often only look at the uterus, ovaries and tubes, quite often endometriosis is in other places like on the bladder and bower or inbetween, so you need a specialist. You should be able to ask to be referred to a specialist. Also general gyane tend to want to try the coil, as to them hormones are a form of treatment. Hormones may slow any of the above conditions growth but will not stop them, it may however give you time to think about what you want while controlling some symptoms, but they have their own side effects as as you know they don't always work.
A few places to look:
The NICE Guidelines for Endometriosis has a pathway NHS gynae should be using to diagnose, you can find lots of other conditions on the NICE website too.
Sadly like much of the womens health problems, we need to read up and really know what we want so we can push for the right / appropriate treatment for us as individuals otherwise we'll just be ignored.
thank you so much! all the information you've given me has been so helpful. to be honest, i had given up on the endo diagnosis just because nothing had shown up on the scans so it's sort of a relief to me that it could still be that.
i would love to have the laparoscopy done but it'll mean trying to get my gp to refer me to the appropriate service. i actually work at a hospital that offers an endometriosis clinic so perhaps i could suggest that to her.
What you describe is currently my life. The reason for me is fibroids. The combination pill actually controls my bleeding better but it makes me very sick (headaches, heart issues) The minipill makes me also sick (exhausted, mind fog) but less dramatic (my heart is ok).. so I take it and accept smaller constant bleeding. On the last big bleeding I got Tranexamic acid, it doesn't stop it, just makes it less uncontrolled, bigger clots.. And gives me terrible leg cramps. What ever the cause is for you i have 2 thoughts: this is way above GPs knowledge and ask for iron check!
Hi SraB , I’ve chatted to you before, we had very similar experiences with our fibroids, symptoms etc. Please read my reply below, updates where I’m at with everything and please go and insist on an MRI scan if you haven’t had one already xx
Hi @itselenax I’ve chatted with you on another post and I’d really advise you insist on an urgent gynae referral from your GP. This is the first step to getting answers. When you get your gynae appointment, go prepared with a history of your symptoms, how it is affecting your life etc, pain history etc. Also any questions you want to ask. They should offer you an endometrial biopsy as a first test and this can be done at that appt. Ask about a pelvic MRI scan as ultrasounds don’t show up things like endo and adeno and is the most detailed scan they can do. Things have escalated quickly for me. I had 2 ultrasounds, last one start of Feb, then got my gynae appt a week after the Feb ultrasound. I talked everything through with my gynae and explained I don’t want hormonal medications, as the bleeding and pain was seriously impacting my life and work now. I have severe anaemia due to the prolonged heavy bleeds and have had 3 separate blood transfusions in the past 9 months. Unfortunately sonata treatment on the fibroids isn’t suitable due to the size, and there was 2 MDT meetings where they decided I needed an MRI scan. This happened last week and then I had an urgent CT scan last Sunday. It seems I have a concerning pelvic mass in my womb which has grown quickly the past couple months and the CT shows I have some concerning nodules in my lungs. Not confirmed yet but it most likely cancer - a fibroid which is a sarcoma and may have secondary in my lungs. Now waiting on a 2nd opinion from Addenbrookes and the outcome of a meeting next Tuesday to hear what treatment (hysterectomy, which is what I wanted to happen anyway before I knew about the concerns) and when and where it will happen.
I don’t want to scare anyone, and there could be lots of other causes for your symptoms, but please go and get checked out by a gynaecologist and ask for a MRI scan, it’s so important.
I’m feeling calm and positive about all of this and I’m glad I listened to my body, you know when something isn’t right. I was offered the POP too and refused it because I wanted to find out what was going on with my body. I feel synthetic hormones can mask symptoms, but if they aren’t working for you, then there is something else going on you need to look into.
Hope you get your referral quickly and find out those answers xx
thanks so much for all of this information! i find it difficult to "argue" with my gp but think at this point i NEED to. i'm going to write all of my symptoms etc down, print it out and bring it with me. i really want to get this sorted out now as it's been 8 years since i started seeing my gp for all of this now. my iron levels are actually quite high (to answer your question SraB ) as gp has queried my levels before.
i'm really sorry to hear about your CT scan, i hope you can get all the treatments and care that you need. i've considered a hysterectomy before but i wouldn't be allowed to have it i don't think as i'm too young.
the POP did work for a long time for me but it's obviously stopped working for the last 6 or so months and to be honest i don't want to be on the pill for the rest of my life. thanks again so much for all your help xx
I am very inspired by you. You really have done your best, not taking it when they just send you home. Indeed, we know when something is wrong, I keep seeing an image of my gp saying "just take it easy" before I pushed for the first iron test, 4.9 hb and she kept saying it was stress.. I wish you had better news but at least there is more clarity and they are taking steps. Let's us know how it goes!
Thanks so much I feel I’ve been lucky with my GP and gynaecologist, they are receptive to listening to me which is half the battle! It helped that I had experienced anaemia before as I had awful periods in my early twenties and after explaining how much blood I was losing back in July last year my GP immediately booked me a blood test - that is such a simple thing to do and should be standard practice in this situation. I also find it useful to write it all down and prepare for any consultation, just main points and then you don’t forget anything or get distracted by what they are saying to you. Also writing it in an email is good too, in a calm, polite way and it will help get your point across. There are a lot of people who seem to rant and complain at their GP or consultant and I think this gets you ignored! Just point out the facts, your symptoms, how it makes you feel, your concerns etc and they will listen - if not, ask for a second opinion. I will keep my profile updated on here as much as I can, as I hope it will help others who may be experiencing something similar or know someone who is. Good luck with your health too xx
I completely forgot to reply to this but just wanted to say thank you! I've decided to write down my entire history and send it to my GP prior to the Friday appointment as I feel that they never check my history before the appointment. I have specifically asked in the letter for a referral to an endo clinic as well as a scan if possible. I will let you know how it goes!
That’s brilliant I’m sure that will really help. You have to be an advocate for your own health these days as time is so short with GP consultations. Best of luck with it and hope it goes well x
Morning Weaver, just to let you know that I managed to get myself referred to an endo clinic and have a face-to-face appointment tomorrow! I'm really happy/nervous and I hope it goes well x
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