Hi ladies. A very Happy New Year to you all! I am hoping that 2023 treats you all with improved health and a wealth of happiness.
I have seen a lot of posts recently appearing on my feed regarding treatments and hormones, and so I just wanted to share my recent experience of stopping all treatments.
For background I am in my 30s and have experienced painful and heavy periods since I was a teenager. At age 16 I began the depo injection and have since used the implant, mini pill and combined pill (high and low oestrogen versions) without any respite between on doctor advice to control my periods and pain.
For the past decade I have struggled with dehabilitating pelvic pain that severely worsened in 2020. I have painful bladder syndrome and irritable bowel syndrome but my flares are very entwined with my menstrual cycle, which in itself is very aggressive.
As full disclosure, I have not had an "official diagnosis" of endometriosis via laparoscopy or MRI. This is due to a series of "unfortunate events" and the usual difficulties with the healthcare system we all experience as women. However, I do have every classical symptom of the condition (as listed in the guidelines), have responded well to hormonal treatments on several occasions, and have examinable indications such as tender uterosacral ligaments, unexplained ovarian cysts, and a displaced uterus. Three independent gynaecologists have all stated that I most probably have endometriosis, which is also likely the cause of my bladder and bowel problems.
So back to it - in 2020, my condition deteriorated beyond "flare ups" to daily dehabilitating pelvic pain with fluctuating referred pain in my back and hip on the left side. My bowels became very dysfunctional and my periods exacerbated all symptoms beyond my own comprehension. At first I was prescribed a variety of different combined pills (as I historically had lots of negative side effects from the progesterone contraceptives), was offered a coil more times than I can count (decided this is not for me), and prescribed mirabegron for my bladder symptoms. I tried the FODMAP, IC and anti-inflammatory diet and began taking vitamins. Nothing helped, and I got worse month by month. Then in 2021, a BSGE specialist gynaecologist advised that I start Dienogest with Cerelle in combination.
The benefit was that the Dienogest did stop my periods. As a result all of my referred pain stopped, I had no horrible periods with associated symptoms, and my bladder and bowel symptoms became significantly more controllable. However, the daily ache I experienced low in my pelvis did not go away, my mood became very depressive, I completely lost my personality (and libido for that matter), I was extremely fatigued and "foggy", and I slowly developed joint pain and restless legs. This significantly impacted my work (full-time healthcare professional), relationship (newlywed) and studies (part-time masters degree). So to combat these symptoms I was prescribed various cocktails of amitriptyline, codeine, vitamins, mirabegron, toltredine and duloxetine whilst sticking to the hormones religiously.
Finally, it was suggested that I should instead take the decapeptyl injections with add back HRT. Given my symptoms with Dienogest and current surgical lists, I just felt that this was a big risk for me to take. In particular I was concerned about my mood and joint pain.
So, in October 2022, I decided instead of swapping onto injections that I would stop ALL of my medications one by one, and add back the ones that were actually significantly helping me without hideous side effects after a short period of being "pill free". I dreaded the worst, expecting excruciating pain, no sleep and uncontrollable diarrhoea and urinating.
What I have found instead is that my medications were making me sick, not better! I have now stayed medication free for 3 months and my mood has improved massively, my joint pain has subsided, my bowels and bladder are almost normally functioning, my personality is back, and I have more energy (not that of a completely healthy person but still much more!). I'm also catching less colds than those around me, suggesting I am less run down (miracle in this winter given I work with infections all day).
As for my periods - they have returned and have improved massively! Whilst still quite sore and heavy, they are not as long, painful or heavy as previous to my Dienogest treatment. My daily pelvic pain has also substantially improved, and I am now almost pain-free between the end of my period and ovulation (which seems to trigger my pain all over again but again at a lower level than previous). Whilst on my period I have been able to manage with paracetamol, ibuprofen and a portable tens machine. This has allowed me to enjoy living again. I've not had a sick day off work since and am able to socialise with my family like I used to.
Whilst I am in no way saying going medication free is a good idea for everyone, it has worked for me. I have seen a lot of posts regarding anxiety around side effects before taking or to stop taking hormones, especially about Dienogest and the injections. I just wanted to put my experience out there to reassure people that not all drugs are benefiting your body. Being on Dienogest obviously improved my gynaecological issues massively, however, it did also degrade my quality of life. Coming off a drug that may be helping you is scary when you are in chronic pain, but your body is a massive ecosystem, and sometimes it needs to heal itself without intervention. I am still in pain, and not a "well woman", but I am a hell of a lot better now than I've been in years. The drugs have done the job I needed them to do whilst I was at my worst, and now I feel I am healing better without them.
Sending you all a lot of love, and wishing the best for you all in your health journey. I hope that this helps anyone who has concerns about stopping a treatment❤️
REALLY Confused - Can Anyone Help? Are MRI Scans Useful For Confirming Endometriosis?
Help!! Is it Endo?
Bladder pain and suspected endo
Endo inside bladder
endo diagnosis problems
