Dont want to take the pill forEndo

[Rachel20]

I have not had good experiences with contraception ever.But have spent my life on them..changing from one to another.My gyne appointment is not till. 2024 as a go forgot to send in my referral.My gp said to have the.Merina as that is all gyne will do for me anyway?This was my worse contraceptive experience.i have been given more advice( as am waiting for an appointment and did not have the merina) which is to start the pill.I tried it even against my wishes as i am in agony.Real agony.I had terrible headaches on ths pill which resulted in an aura headache .Now i have been recommended by gyne to try the combined.Pill. Is this all gyne will do for me. ? Will they only give me contraception..My gp was supposed to refer me back in 2021, so i should be much nearer the top of the list yet they forgot to refer me.So now my.appointment is in 2024. was someone can answer some of my question.Im really at a loss.

[Avourneen]

Hi Rachel,

A good gynae would send you for a scan so they can see how bad the endo is. If it is severe they will normally offer your surgery. They might suggest that you try the progesterone only pill or Mirena while you wait for surgery. This is to stop your periods and reduce pain.

I have heard a lot of people find getting the coil put in is really painful. I don;'t think all contraceptives cause problems, what type of pill were you on before ? You would probably be put on the progesterone only pill it's the only one you should be offered if you have endo.

I'm on it and it stopped my periods and really reduced my pain but at the start it made me bleed a lot. No one can force you to take something you don't want to but if it stops your period and really reduces your pain while you wait for surgery it might help you. Different pills have comletely different contents.

I think your GP is pretty stupid to say he/she knows what the gynae will do, i'd look up your local gynaes though and check there is one who is a specialist in treating endo. BSGE centres are meant to have the best gynaes.

[Rachel20 in reply to Avourneen]

Thank you for your response.I had the woo rogesterone only pill but it gave me terrible headaches then an aura migraine.So it had to be stopped.Now they are saying taking the combined pill.I just wondered if you know what scans the gyne will give me as i have had an ultrasound and all that was found was pelvic congestion.xxx

[Avourneen in reply to Rachel20]

Hiya, you really shouldn't take the combined pill it will make any endo grow faster.Did you have a transvaginal ultra sound ? That or an MRI is usually the right scan for endo/adenometriosis.

I don't know much about pelvis congestion but it looks like that can only be diagnosed after a special doppler ultrasound (don't know what that is).

I saw a truly brilliant sonographer in London it cost 400 pounds but he is meant to be one of the best in the UK. He saw and recorded loadsof things the other scans I had missed. He was super kind and also spent 30 minutes talking me through exactly what he had fund and what steps I could take to try to solve my problems.

Pelvic congestion is quite different from endo but it does cause pain in the same area. I'm not sure what can be done to help with it maybe some ladies on here have had sucessful treatment for it.

I know the most imporatnt specialist in this field is based in Switzeralnd and he has a really impressive level of extpertese in what he calls nueropelvology. It might be worth researching this and seeing if this specialism offers anything to help pelvic congestion.

[Rachel20]

I have just had an ultra sound and transvaginal ultrasound.My gp doesnt believe its causing my pain.so said i had endo instead.He said pelvic congestion was a contraversial diagnosis.Because of covid i have never actually sat down and told a gp all my symptoms.Just wondered only if you feel comfortable if you may be able to dm me the sonographers name in London.I really think i need to take care of this myself now.I dont think i have been treated very well atall.Its all quite upsetting xx

[Lindle]

The combined pill is usually the first recommended medical treatment for endo so it would be worth a try. It contains opposed oestrogen when it is unopposed oestrogen that is linked with endo.

Unfortunately you wouldn't get a referral to a BSGE centre at the moment as you would need evidence of severe disease, but the referral must be to a gynae with a special interest in endo - so additional training.

Pelvic congestion syndrome is essentially varicose veins in the pelvis. Neuropelveology is concerned with addressing dysfunctional pelvic nerves so I doubt that would help, but you wouldn't get a referral anyway.

As you have been let down by the referral not being made I should contact PALS to see if you can get an earlier appointment.

There is also a world renowned ultrasound specialist in Southampton. This is the link to her educational website. This sort of expert scan will show deep endo that is missed on regular scans but very mild disease still won't usually show, so whilst it is more likely to rule endo in it can't entirely rule it out.

gynaecologyultrasound.com/

[Rachel20 in reply to Lindle]

Bless you.Thank you Lindle x