Qlaira

[Ge0rgie51]

Has anyone been prescribed Qlaira for pain and symptom management.

I’m newly diagnosed with level 4 endo. I have two placebo pills at the end of this week. I’m petrified about horrendous symptoms returning then.

Does anyone have any experience with this on this pill?

This pill so far has been ok, my mood has been level, which is nice!

Thanks

[Lindle]

It may relieve some of your symptoms if they are period related by stopping them, but the pill isn't a first line treatment for stage 4 endo. Others may be able to give their experiences of this pill but have you now been referred to a specialist endo centre?

[Ge0rgie51 in reply to Lindle]

Hey Lindle, I’ve gone down the private route for diagnosis, so I’m seeing a consultant specialist in Bath, I’m having my surgical planning MRI on Wednesday with contrast, as my bowel is involved as well as ovary’s and womb, then an appointment to talk surgical options afterwards. Initially the Qlaira has come from the private menopause clinic I’ve been seeing for just under a year. You can imagine what the oestrogen in the HRT has done to my endo.

I feel it’s my endo that has been causing all my issues. But there we go, at least I am getting answers now!

[Lindle in reply to Ge0rgie51]

Remember that private care must be to the same safety standards as NHS which in the case of severe endo means a private endo centre or the equivalent multidisciplinary team of advanced experts. I'm not aware of a private endo centre in Bath?

Why are you under the care of a menopause clinic out of interest - do you have postmenopausal endo? I ask because I did. Can I ask how old you are and when you say oestrogen in HRT were you on oestrogen-only?

[Ge0rgie51 in reply to Lindle]

It’s a team of advanced experts in Bath.I had my MRI on Wednesday, Level 5 endo.

I’ve just turned 45, I paid to speak to someone who would take me seriously at a private menopause clinic. There’s a bit of a pattern with womens health never being taken seriously with GP’s isn’t there.

All HRT has stopped for now. Which I’m missing, but I understand why.

My Endo flare is just as terrible on Qlaira, I’m camping and living in hell at the moment.

Have you had to have surgery? Are you feeling better now?

[Lindle in reply to Ge0rgie51]

Yes I had surgery 14 years ago privately in one of the country's top specialist endo centres and never looked back (touch wood - I'm 68 now). I had post menopausal endo (after surgical menopause) and was put on oestrogen only HRT. I developed a very aggressive 13 cm pelvic mass with its own rapid blood supply which was thought to be end stage ovarian cancer from an ovarian remnant even though there had been no endo evident at the surgery, my ovaries were fully intact and I didn't even have an endo diagnosis then. It all turned out to be this aggressive post menopausal sub-type of endo associated with oestrogen only HRT. So yes, oestradiol can be pretty powerful when it comes to driving endo. It is more associated with oestrogen only though.

There isn't a specialist centre in Bath on the BSGE list and if you were having this surgery on the NHS it would have to be in a specialist endo centre. The same standards do apply privately so you really do need to determine that they are advanced excision surgeons working to BSGE standards in what is recognised as an endo centre set up. You will have what is recognised as stage 4, which is the highest in the UK. There should be two lap surgeons working together for joint decision making plus colorectal if the bowel is involved and urology if the bladder/ureters are involved, as is usually the case with stage 4. The cost would be expected to be a minimum of 10£.

Would you mind messaging me the names of the team as it would be useful to know if there is an established centre set up there.

[Ge0rgie51 in reply to Lindle]

The closest NHS Hospitals are Southmead and St Michael’s in the Bristol and Bath area that are working in line with BSGE standards as an Endo Centre. I won’t have any hope getting referred to them as my gp suggested I tried swimming during a flare up, when I couldn’t stand, let alone put a swimming costume on. I work in the NHS, but I’m having to pay privately as I’m struggling to walk round during the day due to pain and swelling. So I need help before I loose my job.Are you advising I shouldn’t proceed unless there is the correct amount of specialist surgeons involved?