Progesterone only pill & basically havin a unplanned period every couple of wks !!
Exhausted, depressed & missing days from work !!!
Had endo for yrs & lived around it as ya ... - Endometriosis UK
Had endo for yrs & lived around it as ya do. But since the gynea hav got involved my life feels worse n out of control ?!? Anyone else ?
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madtabby
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Hi. Cant they change the pill?? Have you had a lap for the endo?
Lisa x
Hiya Lisa ,
Yerr they changed it again about 2 wks ago and ive been bleeding again for the past 10 days 
No Lap as it was very aparent on scans & other tests i hav extensive endo, a heameraging cyst, fibroids & PCOS ...
Im getting bored of being ill & tired and missing out on life at the mo. since the hospital has been involved my life has got worse not better.
I completely empathise with you.
I withdrew from all medical intervention from 2004-2013. I only saw my GP for help with pain.
Last year I was referred back to the hospital. To cut a long story short, after an MRI scan I had the mirena put in ( I'm happy with it so far.)
Last month, I was rushed to hospital with a suspected leaking or ruptured cyst. An urgent appointment on Thursday at the hospital, was frustrating for me. The hospital want to put me on a GNRH drug which I'm not happy with. Bad side effects and only a temporary treatment!
So I think I'm going to withdraw again from the hospitals intervention. I have had Endo for 20+ years and I now have got adenomyosis too. My GP is wonderful and I will consult with her about what the hospital said.
I do think that once hospital doctors get involved, we do loose a certain amount of control. It's really important to wrestle it back as it's our body and our life!
I am going to try the Endo diet, look after myself more, take supplements and continue to ask for the support from my GP. I know that if things get unbearable I can be referred back.
I bled constantly on the progesterone pill. Is it worth you considering the mirena? Like all things some ladies hate the mirena but other ladies find it great. I was told to expect about 3-6 months of irregular spotting, when I had mine put in. I only bleed for 20 days and my normal period was so light! Long may it continue!
Best wishes,
Barbara x
madtabby in reply to
Arhh thank you barbara for your response !!! Im glad im not the only person to feel this way & do something to take back control.
Im considering the coil but they want me to give the pill abit longer as ive got so much going on in there lol
Ive modified my diet and it has helped quite abit .
I just feel at least when i knew i was due on i could plan my life and work around it. Now i never know when im going to be ill !!
Hope u continue to improve & good luck with the diet !
X
Wow...they diagnosed all that by a scan!! Have they done anything about it though??
I had an MRI scan back in 2011 where they diagnosed cysts and possible endo, all I was told was that I would probably have this til I went through the menopause. The gynaey was more concerned with a herniated disc that showed up on the scan, back pain was something I'd been suffering with for years but I got no help from GP so been going to chiropractor and paying privately. Back pain still horrendous!!
Anyway last year I had so much pelvic pain I couldn't stand it, even hurt to drive as it was especially bad above the top of my left leg. Smears all ok, ultrasound showed nothing, so was sent for a lap nearly 2 weeks ago. Had extensive endo cut out and burnt, separation of bowel and pelvis as the endo had fused them together and also a mirena coil fitted. The coil wasn't discussed 3 months prior when I saw my gynaey, or at pre op, they only told me about it on morning of my surgery, it's suppose to reduce heavy periods and minimalise the endo, as the surgeon can't get to the internal endo only external endo, apparently endo is like an iceberg, most of which is hidden!!
I went back to Dr yesterday as I'm in a lot of pain, just told to rest more and take pain killers regularly. Today I've started my period, first one since coil, so I'm curious to see if it does help with my heavy bleeding. Like you I feel so drained by all this. But we're women, and we're strong, so we just have to keep going. Couldn't imagine a man coping!!
Lisa xx
What is the endo diet?? Lisa x
Its quiet a strict diet , that reduces the estrogen in the body as an excess if it causes gynea probs. plus it reduces the immflatory reactions as well i think.
Its full on tho !
Google endo diet n hav a look !!!
I cut out wheat & diary other than homemade bio yogurt n thats really helped !
Hope that helps lisa x
Hi madtabby,
That,s an interesting question. I'm 48 and only turned up on my GP's doorstep aged 40 with endo symptoms yet I had managed to work around it for years. The reason I went to the doctor was because I was bleeding constantly. I had 2 laps to remove a fibroid, clear endo and separate rectum from uterus. I used to be in agony but somehow I managed for years without going near a doctor and I don't regret doing nothing about it after all the awful experiences women on this forum have had at the hands of medical 'professionals'.
I had a pretty good specialist but even so, despite being told it would take a couple of weeks to recover it took me 2YEARS! All that anaesthetic, zoladex and surgery flattened me. And now the endo is all back again so I'm really not impressed.
So instead of relying solely on 'conventional' western medicine I'm getting chinese medicine from a qualified practitioner, acupuncture, have completely switched to the endo diet and I'm slowly adding in health supporting foods like coconut oil, chia seeds, nutritional yeast, turmeric, green tea etc. In chinese medicine they believe that endo problems ultimately emanate from a poorly functioning liver. I've come across the liver as a source of so many illnesses that it makes sense to be kind to it. I have never heard my specialist say a word about the liver. He's a specialist. Not his 'department'. Therein lies the real problem in my opinion. The medical profession is set up in a manner that doesn't consider the whole person unless you have a truly excellent GP who understands this point and acts like a good 'manager' of your condition. Chinese medicine and other non 'western medicine' approaches generally consider the whole person.
I can't guarantee any of my plan will work but I already feel so much better after being on the endo diet etc. It does take time, dedication and patience. Lost a stone in 4-5 weeks, bloating stopped, wind (belching and farting!!) stopped, not quite so tired, feel better in myself. I feel my body is better able to cope. There is still a long way to go but my view now is that conventional medicine is only part of the story in my recovery and not the mainstay.
Sorry, I'll stop rambling and go and annoy someone on another thread!
To be honest im with you on the chinese medicine. They look at the whole person not just one problem. Ive bin down that root before for other things with great sucess & was planning to with this as found an amazing chinese herbalist & accupucuturist but my circumstances hav changed & i cant afford to go
My gynea is good in that she knows now amount of procedures will cure the endo or fibroids as they grow back so only wants to operate wen im ready to concieve to give me a window of oppotunity.
Keep up the good work with the herbs & diet im pretty convinced it will work for u even if it takes abit of time !
X
Yes, money is a problem for us too. I'm so lucky to have a husband who's happy to do without to try to help me. I lost my job because of endo and rely on him totally now for money. Don't know what I'd do without him.
I haven't tried yoga yet but perhaps if you felt up to trying that, depending on your level of pain, there are plenty of free videos online. It would help you get similar benefits to acupuncture.
You can also massage acupressure points on your body yourself. Again, plenty on the internet. I like this site about acupuncture but also includes info on things you can do yourself at home acutakehealth.com
Good luck to you and I hope you're feeling a bit better today and that it's sunny where you are! x
Touche, Brownlow!
You have hit the nail FIRMLY on the head. The Medical Professions in the UK really DO seem to struggle with the whole concept of HOLISTIC, PATIENT-CENTRED CARE. Rather, they seem to be more concerned with resources, funding and saving cash! They also seem to be intensely motivated by what I call "glory seeking"... basically, I use this term for people who are obsessed with climbing the promotion ladder as fast as they can, becoming increasingly "specialised" in order to earn more money!
I DO NOT think that Western "care" is at all "caring". That concept was thrown out of the proverbial window years ago. It's just about cuts, budgets, statistics, league tables, foundation trusts... blah... blah... NONSENSICAL stuff that has NOTHING TO DO WITH GOOD OLD-FASHIONED CARE!
CARE is about SEEING THE PERSON. SEEING THE INDIVIDUAL. It is about LISTENING and EMPATHIZING. It is about SUPPORTING, and PROVIDING INFORMATION, and OFFERING INFORMED CHOICES. It is about UNDERSTANDING A PATIENT - THEIR LIFESTYLE, THEIR HISTORY, THEIR FAMILY AND FRIENDS, THEIR MEANS OF SUPPORT, THEIR HOPES, WORRIES, FEARS... ALL of these things are what make us HUMAN. And PATIENTS ARE HUMANS!
You are sure as blazes NOT ranting... you are speaking utter sense.
Elaine. x
Hi Brownlow. There's a thread on here by Scooteeder, a fellow endo sufferer, she's looking for people to sign her e-petition, she wants to help people like yourself who have lost their job, or struggle to get time off of work because they suffer with endo. She's raising this issue with her MP and wants the governments support in providing benefit for people in our situation.
Look her up.
Lisa x
