Hello lovely people! So I’ve had various ops & some real stinkers as my endo is pretty bad, last op in March had my bladder / ureter reconstructed! Dec had left ovary & side removed. I just hoped that I would get some time pain free, I was wrong this disease is relentless & to be honest I just feel so low & I just don’t feel like a women anymore just this thing! In pain, cancelling things, out of it sometime on pain meds! Silly me thought trying to get pregnant may help but it’s not happening & pains getting worse every month!
My pain now is very much worse, periods so heavy, problems with my bowels, I’m in pain from day or 2 before period untill around day 16 then the hell restarts with period day 25! I can’t cope with this pain I have to take action.
My bowel issues been so bad, GP worried & I have history of bowel cancer in family so going for tests to check that. Could just be my endo or adhesions/ scare tissue as I’ve had about 8 ops!
So I’m lucky my endo consultant saw me quite quickly. He’s said about my options & some scare me, first off try Cerazette Progesterone only pill, I get aura migraines so can’t have other types, I’m worried about how it’s going to impact my mood / mental health!
Anyone with experiences using this? Anyone with bowel issues? I’m going out of my mind with worry!
If it doesn’t work I’m looking at HRT drugs I think, completely halt my system & I'm so scared about all this. I feel at 36 I’m just young for all that but I can’t live like this anymore!
Xx
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Janeylou
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I’m 36 & honesty my last resort, I’ve had 3 surgeries since dec last year, plus all the others since 2011. mentally I can’t cope with surgery. The prospect of a hysterectomy is last resort as there’s risks of heart disease and Osteoporosis, my consultant is not advising this at this time.
I think i am in a similar situation as you and i am taking a double dose of carazette. It has lessened my symptoms a lot, I still have a lighter period and not pain free also still notice some issues with my bladder and bowl but I would say my symptoms are a lot better than prior to taking the pill. I’m personally scared of surgery due to the severity of the endo sticking to other organs and the potential of being left was a colostomy bag.
I would say you have nothing to loose to give it a try. Xx
Thank you for your reply, sorry to hear your suffering. It’s good to hear that it’s helping your symptoms, a double dose not heard of that. I have to give it a few months, I’ve just started taking them as I just didn’t want to wait for my next period! I’m just so desperate.
Like you surgery on my bowel scares me, I’ve had a load of surgery over the years & 3 just since December, I just can’t mentally manage anymore that’s why I just so hope the pill will give me some help, ease pain, I’m literally in agony for first 2 weeks of cycle, then bowel issues throughout the month. My cycles are short so I just feel like a mess most of the month! It’s tough trying to hold everything together.
My gp has referred me for a colonoscopy to check that it’s nothing else, got family history of bowel cancer, I was told I’ve got endo on my rectum but best to get it checked I suppose. Xx
Hi Janeylou, I have severe endometriosis which was diagnosed via a diagnostic laparoscopy in 2017, when I was aged 29. My consultant was keen to do further surgery a few months after my initial lap but offered me a number of options to try first as the surgery could be tricky and leave me with a bag as my womb and bowel are stuck together.
I tried the combined pill first (which really didn't work for me!), then moved onto Zoladex monthly injections for 6 months (I was against these to begin with but they did help my symptoms) and have now been on Cerazette since last June and haven't had a period since other than small breakthrough bleeds every now and again. In the main, Cerazette keeps my symptoms at bay but still have good and bad days.
I think the key thing to remember is that what works for one of us might not necessarily work for another but you've got to do what is best for you. Happy to message if this would be helpful x good luck x
Hi Vicky2708, thank you for replying & sharing your experience. Sometimes with endo u just feel so alone with it all, being on this group helps!
I’m just desperate for some relief & not keen on the options! I know I’m limited in options. What does zoladex do? My consultant said about meds to halt my system, is that what it’s for?
Been taking the cerazette for about over a week will have to see how it goes. I’m just hopeful & I know if I doesn’t help I’m just going to crash back down again, it just all gets to me so much. Xx
No problem, I'm happy to help. I used this forum a lot when I was first diagnosed. I now run a local support group for those with suspected or diagnosed Endo.
Zoladex is a GnRH (Gonadotrophin Releasing Hormone) analogue, which puts your body into a temporary menopause as GnRH analogues stop the ovaries from being stimulated and stop you from producing oestrogen. Therefore, the endometrium and endometriosis do not grow.
I appreciate it's hard not knowing what to do for the best - I feel when the Cerazette stops working for me, I'm back to square one and that's a terrifying thought for me. xXx
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