Losing hope

[Immilouise]

Hi everyone

I’ve been diagnosed with Endometriosis since May 2018, and since then I have had 3 laparoscopys and every time I have had endo removed (laser)

I was on the depo injection for 2 years however I was told to come off it and try taking the pill instead, it’s been almost a year and I keep forgetting to take it so I decided to come off contraceptives for a little to give my body a chance to mellow out before I either get the coil or try the pill again.

The last week has been horrendous, I have been experiencing pain that I haven’t felt for over a year and I have now missed a week of work and university because of it, I’m feeling sick, unable to eat and I’m pretty much bed bound

My doctor prescribed Co-codamol (30mg/500mg) which is hit and miss for helping my pain, and it’s making my nausea much worse and making me very sleepy (making it harder to go to work)

My family don’t understand my pain whatsoever, my sister told me to be careful taking time off work (not that I already know) as if I can control my pain, which I clearly can’t.

I’m just at a bit of a loss on what I can do to feel normal again, although I have come off the pill I only stopped taking it just over a week ago so I doubt it would have caused the pain because I know it can take a few months for your body to notice, I’ve had no periods or spotting.

I’m at a point where I would rather be admitted to hospital hooked up to a pain relief IV than try and sort it out myself, nothing seems to work

[Afrohair]

Have you never had excision! I’m so sorry your feeling this way it’s difficult when people don’t understand I’m at a point where I haven’t gone to work in months you could try change your diet to see if that helps a lot of people do that in hope for less pain use castor oil packs and drink lots of water hope you come to a solution soon xx

[Halani]

I know the feeling when nobody understands and nobody takes you seriously enough. It is the worst pain possible and it is not bearable whatsoever. Hang in there, try other painkillers and contraceptives, whatever eases the pain. Eventually it passes for some time

[_EndoWarrior_]

What stage Endometriosis have you been diagnosed with? Where was it?

So ablation was done... no excision?

Are you seeing a Specialist Endometriosis gynaecologist at a BSGE centre?

Specialist Endometriosis gynaecologists will be better trained and have more experience in identify Endometriosis.

The fact you have had 3 laparoscopies with ablation tells me they have not dealt with the Endometriosis.

Excision is the ‘Gold Standard’ treatment for Endometriosis.

Do your research....the more you learn, the more empowered you’ll get and understand how Endometriosis works.

I learnt a lot from ‘Nancy’s Nook Endometriosis Education Group’ on Facebook. It is a closed group and must clarify it is not a support/discussion group. It is a Education library with lots of information about Endometriosis and reviews on Endometriosis Specialist Surgeons.

Hope this helps. 🙂 (I had Stage 4 Endometriosis)

[Immilouise in reply to _EndoWarrior_]

Thanks for your reply when the investigation of my endo started in 2017 I went private and all 3 of my laparoscopy surgeries were performed by private consultants.

I was never told what stage I was however each time the endo has been found in different places (most notable around my ovaries- but not directly on them, just around the nerves and they believe that I may have some around the back of my uterus)

I’m now under the NHS with the specialist clinic at Guys hospital in London, we’ve discussed the other type of surgery but my consultant is reluctant to do it due to my age (I’m 21) and based on the fact that I have had 3 previous surgeries in the same area.

She told me she would refer me to a wide range of people such as pain management, a dietician, and a bowel specialist to see if there is any other issues affecting my symptoms

It’s been 2 months since then and I still haven’t received a referral letter, so I’ve emailed her to see what she can do

Thankyou for your reading recommendations, I’ll take a look today!

[_EndoWarrior_]

Did you not receive reports after each surgery? Your GP should be sent one by the consultant.

Private doesn’t always mean the best unfortunately although you get seen a lot quicker than on the NHS.

I think you need to be seen by an Endometriosis Specialist at one of the following centres:

bsge.org.uk/centre/

The contraceptive pill can help relieve pain and heavy bleeding but does not stop growth. May slow it down a little.

Please read as much as you can. You’ll feel more confident asking questions too. 🙂

[_EndoWarrior_]

Just saw that Guys St Thomas in London is a BSGE centre. 👍