Need Advice please...

[Proverb]

I have stage 4 Endometriosis. I was put on a birth control pill to ease the pain and I guess stop my period which has not stopped, what else should I be doing to manage the pain?

For the first time this week, I saw my life being wasted in bed not being able to do anything because I was just too weak. This is not only physically painful but it's draining emotionally too.

[NW248]

Are they going to give you surgery to remove the endo, or have you had that? Have they done an MRI?

What sort of pill is it?

The other options are a Mirena coil or Zoladex injections.

[Proverb in reply to NW248]

I was diagnosed through the MRI, at this stage I’m so lost don’t actually know what they planning. I’m due for a colonoscopy next week.

The Dienogest is a birth control pill.

Is there a certain diet I should be following?

[NW248 in reply to Proverb]

You might find a low carb diet helps. healthunlocked.com/endometr...

[weekari]

Are you been seen in a BSGE centre for treatment? If you have stage 4 then you meet criteria. Have you been given info about what the endo is, what is affecting?

All the pill will do is reduce symptoms though it doesn't seem to be helping you. Your options will depend on where your endo is and how it's affecting you.

[Proverb in reply to weekari]

Thank you for the response. I have not been to the BSGE centre, I actually don’t know about it but will surely reach out to them.

I found out everything I know about Endo through YouTube. It was and to a great extent still devastating for me.

[weekari in reply to Proverb]

If you have diagnosed severe/stage 4 endo, you shouldn't be treated by general gynae, they should instead refer you to your nearest endo specialist centre (that's the BSGE centre I meant) this is the website listing all the centres. If you're in England, your GP can refer you to it directly.

bsge.org.uk/centre/

Are they suspecting your bowel is involved?

I know being diagnosed can be overwhelming and a lot to get your head around but they're is a lot of options for you and support available.

Some people find the 'endo diet' helpful in reducing symptoms. It's quite restrictive though. It's free from gluten, dairy (I would also argue all meat), caffeine, soya, alcohol and sugar. Its cutting it inflammatory foods and anything that's been shown to impact hormones. It's not going to cure the endo but it can calm down things a bit for some people.

Xx

[Proverb in reply to weekari]

Thank you Weekari, I will request the referral.

The MRI indicated that I have endo cysts around 24mm in my rectal area as well. I believe that is one of the reasons I am booked is for the colonoscopy.

[weekari in reply to Proverb]

The colonoscopy might give them a clearer picture. They might be planning on referring you on anyway but it's good to know what should be happening.

If your bowel is impacted then you should also be seen at the specialist centre bit just having stage 4 is enough for the referral.

Good luck with the colonoscopy 🤞🏻

Xx

[Proverb in reply to weekari]

Thank you really appreciate it

[RicEndoUK]

Dear Proverb,

Welcome to the forum and I am sorry to hear you are going through a tough time.

I don't know if you have been on the Endometriosis UK website which has a lot of information on the condition.

endometriosis-uk.org

You may find this particular information sheet useful, which has a section on pain management:

endometriosis-uk.org/sites/...

If you feel you need to talk to someone who understands, we also have a free confidential helpline staffed by volunteers with experience of endometriosis.

You can find more details and the opening times here:

endometriosis-uk.org/helpline

Take care and let us know how you get on.

RicEndoUK

Volunteer Moderator

[Proverb]

Hi RicEndoUK,

Thank you for sharing. I will surely be in touch.

[Vicky2708]

Hi there, I too have stage 4 Endo and have had no surgery to remove it. An endometrioma was drained during my diagnostic lap.

After being provided many treatment options at my follow up appointment, I opted to try the combined pill. This didn't work for me and if anything made my symptoms worse. I then tried Zoladex, which was a life changer although not a long-term solution and so now I am on the mini pill, which seems to be keeping my symptoms at bay most of the time.

It is worth noting that what works for one person, doesn't necessarily work for another but don't be afraid to explore your options. I wasn't originally seen a BSGE centre but have been now. Good luck <3 x

[Proverb in reply to Vicky2708]

Hi Vicky,

Thanks I have made contact with BSGE, awaiting their response.