Gynaecology problems

[Gizmo81]

Hi anyone know if Lupus and gynaecology problems are linked? I have had issues all my life and the only relief is the pill. I’ve had two specialists say they believe it is endometriosis which I have all the symptoms. Had surgery yesterday to check and get it removed but everything is clear, I am very confused. Anyone with similar situation?

[eekt]

Sorry you've had surgery to no avail - Lupus UK has a poster (Lupus-Schematic) showing effects on the reproductive system...maybe it would help to order it and show it to your doctors? (lupusuk.org.uk/order-awaren...

My GP and rheumy don't believe lupus and gynaecology problems are linked, but some patients do 'ave 'em!....clearly if pregnancy can trigger a flare, then they must be...

My flooding and pain were banished to history by a progesterone implant. xxx

[Kerrclan]

Hi Gizmo81.

Two years after my Lupus diagnosis I developed heavy bleeding , abnormal cycle and absent cycles for months at a time. I was fast tracked to gynae red flag clinic. Admitted within two weeks and following hysteroscopy was diagnosed endometrial hyperplasia. I had endometrial ablation , biopsies and progesterone five year implant. The pathology luckily was non cancerous but requires 6 monthly ultrasound scans and internal examination. This was such a worrying time for me. It took me six weeks to stop flaring after this. I also have now lost 3 stones as obesity complicates my condition.

Happy to say now on yearly review with no significant recurrence. I do believe there is a hormonal link to my Lupus as prior to my diagnosis I had regular cycles and no heavy bleeding. I still experience frequent flaring of Lupus symptoms despite hormonal control. I was diagnosed Lupus 4 years after my first pregnancy but experienced joint pains fatigue four months post partum. I also experience bowel cramping and pain which I also relate to flares.

I hope this is of some interest. It’s good that you report all symptoms to make sure other causes ruled out. Well done for taking care of your health & make sure regular women’s health checks like smears.

Take care Kerrclan xx

[Gizmo81 in reply to Kerrclan]

Thank you for sharing, You have been through so much, I seem to have so many symptoms but no real diagnoses. I will keep going through the motions of specialists. I have definitely got worse since having my son 3.5 years ago. I will bring it up to the specialists when I go in April.

[Cann]

Yes, I had lots of gynae problems including that you mention. I only managed one successful pregnancy through staying in bed till 13 weeks and being careful for 17weeks. Doctors never told me why or found out why. I had 3 miscarriages including one set of twins. I was given a hysterectomy and became very ill during and after the surgery and I still have immune system problems.

[Gizmo81 in reply to Cann]

Thank you for your comments, sorry you have been through so much. X

[Hayleyrose28]

Sorry I know I’m a bit late to this post!

I have endometriosis and PCOS and my consultant (a professor of rheumatology) says that there’s really strong evidence in studies that lupus is linked with gynaelogical conditions. He also said to me that lupus is impacted a lot by hormones, so your hormones can trigger flares.

Was your surgery to look for endometriosis done by a specialist, and not a regular gynaecologist? I’ve heard some stories that regular gynaecologists have not found any endometriosis, yet specialist consultants have. Might be worth asking for a referral to the endometriosis specialists (bsge.org.uk/centre/ ) can’t say I’ve had any personal experience with these as I couldn’t fault my gynaecologist but I’ve heard that they’ve been helpful to a lot of people in your position x