Frustrated: I have been diagnosed with... - Endometriosis UK

Endometriosis UK

72,878 members53,250 posts

Frustrated

Smoff profile image
5 Replies

I have been diagnosed with endometriosis and adenomyosis for some time. I have been treated with mefanmic acid, tranesamic acid, I have had a coil, an ablation, I was given Prostap injections followed by Tibilone for the side effects. During the Prostap injections it was great but now, all treatments stopped and into my second period since stopping. I have been in absolute agony.

My GP gave me co-codamol the first month and this month has increased the dose and put me back on the mini pill to "regulate my periods"!

It feels like I have come full circle and am back where I started!!! Does it ever get any better?

Written by
Smoff profile image
Smoff
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Mabes profile image
Mabes

Have you had surgical excision for the endo?

Ideally with endometriosis you want to limit periods by taking the pill back to back or using the Mirena coil or having depo provera injection. So perhaps you can take your pill and have less periods (seems most women doing this have around 4 breaks a year rather than doing the usual monthly). I'm not sure about adenomyosis treatment/s.

If you haven't had surgery or haven't had it recently, then it seems that option would be worth exploring as if you could get rid of as much as possible of the endo then it might reduce your pain somewhat. As your condition is not being well managed by the GP, you should really be seeing an endometriosis specialist. Here's a list of accredited endo centres: bsge.org.uk/ec-BSGE-accredi...

I attend a major hospital where the centre is not accredited, but the surgeon is an endometriosis specialist - so for the moment I'm okay with that.

Lastly, if the co-codamol is not working for you then you could ask your GP to add Naproxen which is a strongish NSAID. It works in a different way to co-codamol and many women with endometriosis find it helps a bit. I've used the two together during my worst times. You would need to be on the Naproxen for 2-3 days before your period or whenever the pain is bad, as it works best by taking it before the pain is terrible.

Smoff profile image
Smoff in reply toMabes

Hi mabes

Never heard of it until now! It has never been discussed as part of my treatment. I don't know if the Dr I see is a specialist in endometriosis to be honest.

It take alternate doses of co-codamol and ibuprofen to try and build up a bit of pain resistance.

I am due back to the gynaecologist in August so will see what my options are.

My period has finished now but I am still having pain!!

Mabes profile image
Mabes in reply toSmoff

You could ask your GP for mefenamic acid or Naproxen - both are like ibuprofen but mefenamic acid is usually given when Ibuprofen isn't working and then Naproxen is given when mefenamic acid stops working. Either one of those can be taken with co-codamol.

How did you get diagnosed? Did you not have a laparoscopy?

If you google your gynaecologist you can see what he/she specialises in - e.g. the first one I saw was a specialist in IVF (which was useless for me as I wasn't trying that/needing that).

If you search on here for adenomyosis you can also see what other ladies are doing to ease that. I do know that in ladies for whom hysterectomy is an option then that is sometimes offered as it should eradicate the adeno, but it does not always work for endometriosis as the uterus/menstruation is not necessarily the problem 100%.

Mummy1982 profile image
Mummy1982

Hi hun.

Sorry to hear about your suffering.

How old are you? Have you had children? Or are hoping to have children?

The only cure for your adenomyosis is a hysterectomy and I can't see how they can be sure it's your endo not your adenomyosis causing alot of your pain.

Jo xx

Smoff profile image
Smoff

Hi both

To be honest adenomyosis has never been mentioned...I only saw it on my Gp records last week when I went!! You ladies seem to have a good knowledge on this but I don't have a clue!

I am 47 and have 3 grown up children.

I was told it was an endometrial ablation - removal of a layer of the lining of the womb. From the advice from you ladies it would appear that I am not getting the correct advice!

Thanks Lindle I will have a look at your profile and see if I can get referral to someone who knows what they are doing!!! X

Not what you're looking for?

You may also like...

Prostap and side effects

Hi my consoltant has put me on prostap for 6 months to help me have a successful ivf. Iv had 4...
Ishret87 profile image

Frustrated

I have been suffering with endometriosis for 17 years since I was 22. I had never suffered with...
pinkpig2009 profile image

So Frustrated!

Hi there, hope everyone is as well as possible today. I apologise in advance but I'm feeling...
Tink80 profile image

What is the maximum time you can be on prostap 3 injections?

I have been on prostap 3 since October 2020, with add-back HRT, Tibolone, since January 2021,...
77yellow profile image

My 'specialist' says that if I am having pain whilst having Prostap injection's, then it can't be Endometriosis. She's wrong isnt she?

So many women on here have mentioned pain despite having Prostap injections, so I know it's not...
Fletch profile image

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.