Ladies, any help/advice to help me with my crazy hormones and endometriosis?

[rachanafen]

I was diagnosed with endometriosis this year, although I have been suffering from non-diagnosed endometriosis for over a decade along with PMDD. Since my diagnosis, I have been put on a waiting list to see a specialist consultant team in Edinburgh, to discuss what treatments are available to me.

After being on this list for 6 months, I am now considering getting a referral from my GP to go private as i'm concerned the waiting time will be never ending and treatments limited and controlled by budgetary restraints. As well as more damage happening, the longer I wait. Any advice?

More importantly, I am reaching out for advice on successful treatments, specifically to help my hormone imbalances; as although I have a decent pain threshold for the endometriosis pain I am more crippled with my associated hormonal imbalances. These symptoms are: constant cystic acne (no matter what diet or healthy lifestyle I have, it stubbornly wont go away), constant abdominal bloating, severe pelvic and ovary pain, back pain and sciatica like pain running down my legs. These pains rotate through my cycle.

I also have severe fatigue which leaves me bed-bound for days. Apart from the physical symptoms, I also have a hormonal induced mood-disorder (its either that or every post-menstrual phase i act like a gremlin that has been dipped in a bucket of water). Finally, and most debilitating is major hormonal depression, with suicidal thoughts during post-menstruation (ovulation phase). Again i appreciate any advice, especially on treatments to stabilise my chaotic hormones.

[BloomingMarvellous]

Generally speaking you don’t need a GP referral to go private. You are paying so you get to do the organisation and paying !

[Loriiim]

Hi, I have similar, it's a lot isn't it! I'm 38 & still arguing with drs about a hormone imbalance but they keep telling me I'm fine &/or I'm too complicated. I had 2 years acne free in my early 20s, whilst on the combined pill after a course of roaccutane. Unfortunately I was then pulled off the pill due to migraine with aura making me a stroke risk. My skin flared up immediately & has never calmed down, despite 2 further courses of roaccutane (not something you should try with PMDD). Like you I haven't found anything at all that helps keep it at bay. I was diagnosed, & then undiagnosed with PCOS. I'm certain I have it - their focus here is on the fact my periods are regular despite having other symptoms.

I haven't found anything that helps with fatigue. The only advice I've been given is to "pace myself", which I've been doing for 3 years after a burnout & still not back at work. It gets significantly worse on the lead up to my period. I'm hoping it'll improve after endo excision surgery. I have a friend who's dealing with hers by being on the combined pill back to back for months at a time, which does seem to relive a lot her symptoms.

For the bloating I'm taking probiotics, peppermint capsules & drinking ginger tea. It doesn't stop the bloat, but does help reduce it quicker. I've also tried various exclusion diets & recently found out I've developed an intolerance to onions. Gastro told me to try probiotics for a month & if no improvement then to try another as they're all different. I'm currently taking the cheapest ones from Holland & Barrett which have so far been the most successful for me. I'm now under colorectal due to worsening bowel endo symptoms, who suspect I have SIBO & gut disbyosis.

For the endo pain I'm just on hot water bottles/paracetamol (I've developed an intolerance/sensitivity to codeine if taken at night, ibuprofen & naproxen, even when taken with food & omeprazole). Hormonal contraception masked all endo/bowel symptoms for me, but progesterone only contraception made my skin worse, aggravated my headaches/migraines, caused fatigue & severely impacted my mental health. Since having the coil removed my migraines have become chronic.

I'm now opting for a hysterectomy with ovary removal to try to balance my hormones with HRT (which is limited again due to my migraines & endo), but only because I'm at a total loss for what to do & this is all impacting my life so much. It has been approved by MDT. In the meantime I plan on trying either Happy Mammoth or Rheal supplements now I'm not having monthly hormone tests. There is also Agnus Castus which you can get in Boots & is supposed to help with PMS, which I saw Rebecca Malik recommend on Instagram (Haywards Heath endo specialist), but I haven't tried this yet either. Unfortunately it all seems trial & error. I've also pushed for a referral to a menopause clinic because a lot of my symptoms are also symptoms of perimenopause.

Not sure what specialist your GP has referred you to, but I'd think you'd need 2 - one for your PMDD & one for your endo, as not all will do both. I'm at a BSGE endo centre & he told me he knew nothing really about PMS, & PMDD is obviously much more severe.

Sorry I can't be more helpful. Just sorry you've got all this going on as well & there's just not enough research into women's hormones or services to resolve it. If you do find anything that helps, please let me know. Good luck.