Getting nowhere and fed up

[Dannie85]

Hi ladies I’m new to this group. I’ve suffered for years with ovarian cysts had numerous iron infusions due to heavy periods every month and the pain is excruciating after a particular bad few months of collapsing after a severe blood loss I managed to beg them for a scan to be told my womb was on the thick side and given transexamic acid this does nothing for me this was 18months ago I spend most months begging to be seen only to them putting it down to heavy periods but the pain is so bad I’m literally bed bound some days. Any advice is welcome x

[Afrohair]

Seriously 18 months is a long time !have you not been back in this time.i would go back to the g.p if you still feel not heard or getting no where write to the g.p manager and ask for a referral to a gynaecologist with a specialist interest in endo.good luck

[Dannie85 in reply to Afrohair]

I’ve been back many times each time I’m sent away with more pain killers and promised a scan which never comes I’ve had 2 scans and told definitely have a thicker womb. I’ve had cysts in the past and definitely feel they are back again. Due to covid I’m just fobbed off.

[Afrohair in reply to Dannie85]

I'm so sorry you feel this way I would just go direct to the g.p manager then and explain you feelings in a nice but complaining letter you might be heard a bit more Sorry if I'm not much help but that's what I ended up doing when I wasn't heard and it did seem to help a little bit just Covid started again and changed things even more and they use it as an excuse a lot

[Dannie85 in reply to Afrohair]

Thank you I will definitely try this feel like a fraud when I ring for a ‘bad period’ so maybe explaining in a letter to them explaining might be better will let you know x

[Noodle1984]

It sounds like you have adenomyosis. I call it endos evil twin sister. Basically the same implants that Endo leaves get left in the uterus muscle lining and they swell and bleed with your period the say same way your uterus does causing extra blood. It also is what causes the thickness of your uterus to grow “bulky”. My Endo specific specialist said that generally it is adenomyosis that causes heavy bleeding and endometriosis that causes pain. You could have both but you can also just have one of them. I have both and fibroids. So I bleed even more.

With either condition you don’t want to leave it untreated. Everyone hates this and wants a “natural” way but Endo (or adenomyosis) isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain.

The only cure for adenomyosis is a hysterectomy but a hysterectomy isn’t a cure for endometriosis. It’s all confusing I know. What I would start doing from today is writing a journal every time you get pain, cramping or bleeding. Mark it down in a journal (I use my phone) and keep an eye on what is your flow (spotting, or 1-5), pain level (1-10), type of pain/location and how long the episode lasted. They can’t dispute it if it’s written down. It will also give you an eye on your patterns. Watch when you get flared up. Was it from a certain food you had earlier that day or the day before, stress induced, ovulation, near your period. This will give you some confidence in going back to the doctor as well.

Have you tried the Endo diet? Or an anti inflammatory diet? It’s the number one thing I recommend.

[Dannie85 in reply to Noodle1984]

Wow! That’s so interesting and definitely sounds like me. I’m so glad I found this page I’m going to do what you’ve said and ring the drs again and see where I can go forward. The journal thing sounds a good idea too because I definitely know there’s a pattern stress etc can alter it diet too. I suffer with migraines so on meds for that which I know are hormonal due to period related. Oh to be a man x

[Gill1977]

I think a thick womb might indicate possible adenomyosis. Might explain your symptoms too xx