Lost and with little hope

[JMID]

I have been bleeding for 14 days.

I was diagnosed with endometriosis after having a laparoscopy for a cyst on the 19th of September. They found widespread endometriosis and the 30 mins intended for the surgery lasted 3 and a half hours.

Since then I have been put on the pill. It worked until 14 days ago and since then the bleeding has gotten worse every day.

I had a follow up hospital appointment last Wednesday. They told me my night sweats , loss of libido and period were probably nothing to do with endometriosis’. They were only interested in booking me for an IUD.

I am faint. I have no energy. The drs surgery never have any appointments. I don’t even know what’s going on with my body anymore.

Can anyone with more experience share ?

I feel so alone

[Vps1980]

Are you perimenopausal? Xx

[JMID in reply to Vps1980]

Nope - or at least not diagnosed and drs have said not likely

[Vps1980 in reply to JMID]

It’s hard to diagnose how old are you? Xx

[JMID in reply to Vps1980]

I was more wanting to know what other peoples experiences are if they had similar

[Vps1980 in reply to JMID]

I was 39 when peri started and docs said it was unlikely then too, it’s another area they know nothing about.

[Ronsk]

Sorry to hear this, I went in to get endo and a cyst removed, they said I would be in around 2 hours but it ended up being 4 hours as I took a bleed when they were trying to remove the cyst and could not control it. They had to call another surgeon into assist. I was close to getting a blood transfusion.in relation to the pill I recall bleeding on and off, the Dr told me it was my body's hormones trying to adjust and would take time. Could you be anaemic? Speak to the Dr, be forceful and tell them you want answers. I remember times speaking to dr, not being helpful and just brushing me off until I'd had enough and I gave her both barrels and she reluctantly gave me what I wanted. It was my right as a patient, and we have rights! Good luck.

[AMJ88]

Hi. I have been on the pill for roughly 5 months. I bled for the last10 weeks, was feeling tired and out of sorts for a while so Dr's booked me in for blood tests. I came of the pill (cerelle) but a week later I had a flare up and was unable to move so decided to go back on the pill for the time being. Having that week off stopped me bleeding but I have no doubt it will start again at some point. When I initially started taking it I bled for 2 weeks at the beginning aswell it can take a while for it to settle. You should still be under gynae care. Ring them up and ask to speak to them, let them know how you are feeling xx

[EliH]

Hi, I am so sorry to hear you go through this.

I am currently still waiting on my laparoscopy, but was diagnosed through ultrasound and MRI at the beginning of this year.

To minimize the periods they gave me first the Cerelle pil (Progesteron only) however, I was bleeding 50 out of the 80 days. Calling the GP before that resulted in them saying that it takes time for your body to adapt to the pill (which is true, but still so much bleeding.....) now I am on Noriday, which is a stronger pill. I still get periods but relatively regular and just 4/5 days. Perhaps that would work for you too until the IUD.

X

[Lilyjack]

Hi,Every hormone therapy I’ve been on has caused prolonged bleeding. Sometimes spotting for weeks on end sometimes full flow the worst was with a marina and I bled for 3 months stopped for a week or so then started again for months (worst year of my life!).

A GP suggested to me it may be due to a progesterone intolerance but obviously there is no real way to diagnose this.

I also struggle with my weight when on hormones too but you may need to do what I have done and decide what is easier to live with.

Personally bleeding without pain is easier than pain without bleeding.

I know it’s not a choice we should have to make but we have to do what we can to try and have a life!

[Chloe_neal]

Hey! Sorry your going through this! I can relate to this so much I was bleeding heavily for 9 and a half months my bleeding has only just stopped 2 weeks ago and then it will come back in 3 weeks and repeat the months again! I was depressed, tired you name it. I highly recommend getting the IUD as my consultant said it’s best first treatment for endometriosis! I’m having my surgery on the 7th January to figure this all out! I hope your better soon ! Message me and we can have a talk about it. X

[JMID]

I was crying reading your replies - I feel so relieved for being less alone Why is it that we have to go through this and we know more than the drs ???

I ended up in hospital last night after feeling faint and my asthma flaring up - they are putting me on tranexamic acid and mefenamic acids to stop the bleeding but said IUD is the only real way out.

Luckily I didn’t need a transfusion and I wasn’t anaemic.

I can’t believe that we are just meant to bleed - how are we meant to feel sexy ? Or confident ? When we’re gushing with blood constantly - awful.

Thank you all for being there seriously