Yeah that's one of my worries. I had a lot of issue with the pill, don't think the hormones agreed with me, especially the mini pill - I bled for weeks straight. So then I went with the coil but not sure the copper coil is doing much for me so I'm nervous about the hormones but if it relieves the symptoms of what we think is endo then I'm willing to give it a go!
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I'm really sensitive to pain apparently from the endo in bowel and pouch of Douglas. It's probably psychological too as my whole adult life has been dealing with gynaecology issues.
It is sometimes impossible to have sex and such a mood killer.
Any routing around up there makes me freeze in panic
I can't take the pill due to migraines and family history of blood clots.
The depo injection was fab however its a big surge of hormones and will effect everyone in a different way and its in the system for 3 months.
If we weren't trying to get pregnant it would be my first choice.
It is sometimes impossible to have sex and such a mood killer.
Any routing around up there makes me freeze in panic
I can't take the pill due to migraines and family history of blood clots.
The depo injection was fab however its a big surge of hormones and will effect everyone in a different way and its in the system for 3 months.
If we weren't trying to get pregnant it would be my first choice.
@Inforapenny I honestly think you and I are twins!
The POD/rectal pain and general discomfort is the worst day to day symptom for me. I'm having to decide at the moment what surgery I want - lap w/ excision or full gyn/colorectal big surgery. I was tempted to go for the latter but the complications and recovery look horrific so I think I'm going to have another load of excisions and see if it helps. Last time I was pain free for 2 years afterwards.
The POD/rectal pain and general discomfort is the worst day to day symptom for me. I'm having to decide at the moment what surgery I want - lap w/ excision or full gyn/colorectal big surgery. I was tempted to go for the latter but the complications and recovery look horrific so I think I'm going to have another load of excisions and see if it helps. Last time I was pain free for 2 years afterwards.
hi everyone! if people don't mind could they tell me what hormonal pill they've been put on / tried and has worked the best for them? i was prescribed 'Sibilla', i'm not a huge fan of it as you're not supposed to have a break between packets and I would prefer to keep everything as 'natural' as possible, plus, it's not exactly helped with the pain (however the symptoms have lessened).
Got my MRI results back and they found a big gang of cysts and pelvic fluid
.
Sorry to anyone that's having a bad endo day/week!
Got my MRI results back and they found a big gang of cysts and pelvic fluid
.Sorry to anyone that's having a bad endo day/week!
good luck for tomorrow!
@soymilk its such a difficult one as everyone has a different experience. For me my best experience was with nuvaring.
I can't really comment as I wasn't really aware of my condition back then. I had two for a total of about 5 years. I would say that on the copper I do get pains and symptoms so it might be worth a go if your willing, but I know its quote a lot to have it put it and then taken out. I can't say I'm in love with my copper coil and I am now counting down until it comes out.
Haven’t been diagnosed with endo yet (waiting for my referral appointment) but I’ve had all the symptoms for years.
I can only talk about contraceptive pill.
Ive been on ‘Cerelle’ progesterone only pill for 5 years now. I don’t have a break so don’t have periods which is a godsend for me as I suffer horrendously when I’m on.
My main symptoms that have obviously stopped are: heavy bleeding, passing clots, extreme pain and vomiting when on my period. But I still get fatigue, very light spotting, pain during sex and back ache. Also my weight is up and down and suffer with acne due to this pill. I hope your pill works for you x
Thank you!hi everyone! if people don't mind could they tell me what hormonal pill they've been put on / tried and has worked the best for them? i was prescribed 'Sibilla', i'm not a huge fan of it as you're not supposed to have a break between packets and I would prefer to keep everything as 'natural' as possible, plus, it's not exactly helped with the pain (however the symptoms have lessened).
Got my MRI results back and they found a big gang of cysts and pelvic fluid
Sorry to anyone that's having a bad endo day/week!
good luck for tomorrow!
Hello,
I'm not sure how I can give you permission to post BUT if you email, I can copy and paste what you post??
but YES, please because the bladder and bowel issues info are needed badly. I do suffer with them but not as much as other stuff.
[email protected]
I'll post it word for word under whatever name you like
I've been better than normal today. Leg and back pain with tummy ache but nothing a cocodamol won't fix.
My work are really good. But I told them about it in my interview and they employed me knowing about it so they don't have a choice at all.
I'm not sure how I can give you permission to post BUT if you email, I can copy and paste what you post??
but YES, please because the bladder and bowel issues info are needed badly. I do suffer with them but not as much as other stuff.
[email protected]
I'll post it word for word under whatever name you like
I've been better than normal today. Leg and back pain with tummy ache but nothing a cocodamol won't fix.
My work are really good. But I told them about it in my interview and they employed me knowing about it so they don't have a choice at all.
Ah thank youcan we post on your blog?
My issues are bowel and Bladder which I find there is little info on so please if you need any info in these areas just ask
I'm really struggling today. I had about 3 hours of sleep. My bladder is in so much painup all night and same old feeling like a severe UTI I can't keep any urine in.
Feeling sorry for myself today.
Has anyone got help from work? I'm looking to see if I can work from hope when unwell. It's not every month just when I'm so unwell I can't move and need my own toilet etc
I also can't sit because of my rectal pain.
I'm lucky as most of the time I'm in an office. I wondered if anyone had flexi work when you have a flare up?
Endo twins
I go between thinking just have the major surgery to being petrified and one wrong move and there is potential of a stoma and then added complications
and recovery times are so long. When my endo is really bad I can feel the part of my bowel that is worst effected like I just want to rip it out.
I mentioned earlier on that I got a hospital appointment last week but it wasn't my gynaecologist and the stand in was utterly tit.
He contradicted my normal gynaecologist and hadn't read my notes. He kept saying you need to get pregnant before surgery.
My main issue is I can't sit down and I get sharp contractions up my bum and deep in my bowel and sides.
I also have sudden bouts of the worst diarrhea, its grim!
I'm trying to be positive and hope to do more exercise once we're out of lock down.
I do believe exercise helped my symptoms but it's not a cure.
I will do! There is such little info about bowel endo xHello,
I'm not sure how I can give you permission to post BUT if you email, I can copy and paste what you post??
but YES, please because the bladder and bowel issues info are needed badly. I do suffer with them but not as much as other stuff.
[email protected]
I'll post it word for word under whatever name you like
I've been better than normal today. Leg and back pain with tummy ache but nothing a cocodamol won't fix.
My work are really good. But I told them about it in my interview and they employed me knowing about it so they don't have a choice at all.
I demanded testing for ibs and things because nobody ever told me it could be endo related. So bad. Your story will be so so good to post. People need to know this stuffEndo twins
I go between thinking just have the major surgery to being petrified and one wrong move and there is potential of a stoma and then added complications
When my endo is really bad I can feel the part of my bowel that is worst effected like I just want to rip it out.
I mentioned earlier on that I got a hospital appointment last week but it wasn't my gynaecologist and the stand in was utterly tit.
He contradicted my normal gynaecologist and hadn't read my notes. He kept saying you need to get pregnant before surgery.
My main issue is I can't sit down and I get sharp contractions up my bum and deep in my bowel and sides.
I also have sudden bouts of the worst diarrhea, its grim!
I'm trying to be positive and hope to do more exercise once we're out of lock down.
I do believe exercise helped my symptoms but it's not a cure.
I will do! There is such little info about bowel endo x
I have bowel endo tooEndo twins
I go between thinking just have the major surgery to being petrified and one wrong move and there is potential of a stoma and then added complications
When my endo is really bad I can feel the part of my bowel that is worst effected like I just want to rip it out.
I mentioned earlier on that I got a hospital appointment last week but it wasn't my gynaecologist and the stand in was utterly tit.
He contradicted my normal gynaecologist and hadn't read my notes. He kept saying you need to get pregnant before surgery.
My main issue is I can't sit down and I get sharp contractions up my bum and deep in my bowel and sides.
I also have sudden bouts of the worst diarrhea, its grim!
I'm trying to be positive and hope to do more exercise once we're out of lock down.
I do believe exercise helped my symptoms but it's not a cure.
I will do! There is such little info about bowel endo x
I'm currently waiting surgery for it. And the other 83747383 places it is. Even on both ureters but yeah my bowel can be so bad. And I can't get off the toilet. FmlSo when I was taken to AandE last year they thought it was a case of food poisoning and then an appendices
And then I was on the bowel ward for a week. Plus the 15 years of issues.
Not one doctor, consultant, nurse asked about my ovulation or periods. If they had then perhaps my diagnosis would have been made sooner.
It's mind boggling. My medical history was screaming endometriosis but I got told oh its ibs, oh its uti, oh its in your head, it's your vaginal flora!
If only someone had joined up the dots.
Oh and don't get me started on the medical profession saying women and girls are embarrassed and that's why we don't get diagnosed.
this is exactly how I feel! I have a friend with a stoma from IBD and she copes with it really well but I just feel like it would be one more thing to deal with on top of everything else and I don’t want another!Endo twins
I go between thinking just have the major surgery to being petrified and one wrong move and there is potential of a stoma and then added complications
I’ve just seen this on another group. So true!
Attachments
Had to go for an antenatal checkup recently and they left me in a room with my hospital notes.
Started reading through to pass the time and it made me so sad and angry about how endometriosis and women’s issues are treated in general.
They’re so much evidence in my file of me not being listened to, comments like patient was difficult when it was explained that they would be exploring my symptoms further. 4 reports about me being unable to tolerate an internal examination/smear and not once, did any of these Drs wonder why and want to find answers for me.
I finally got good treatment and some answers when I was referred to a private hospital (on nhs but something about shortening waiting lists) and the specialist actually had time to listen to me
Started reading through to pass the time and it made me so sad and angry about how endometriosis and women’s issues are treated in general.
They’re so much evidence in my file of me not being listened to, comments like patient was difficult when it was explained that they would be exploring my symptoms further. 4 reports about me being unable to tolerate an internal examination/smear and not once, did any of these Drs wonder why and want to find answers for me.
I finally got good treatment and some answers when I was referred to a private hospital (on nhs but something about shortening waiting lists) and the specialist actually had time to listen to me
If you can spare 5 mins
I filled it in. Always makes me so upset to think that we have all suffered for ears and made to feel like we're moaning and being difficult
SurveyOptic - Department of Health and Social Care
consultations.dhsc.gov.uk
I filled it in. Always makes me so upset to think that we have all suffered for ears and made to feel like we're moaning and being difficult
I don't know if you've all already seen this but it's worth a read 
https://www.bbc.com/news/health-56245521
https://www.bbc.com/news/health-56245521
I saw this tooI don't know if you've all already seen this but it's worth a read
https://www.bbc.com/news/health-56245521
finally some hope! I'm struggling today, I have total brain fog ,a headache and exhaustion which are some of my issues and my tummy is very swollen and soar 
I am not falling pregnant so when my crappy gynaecologist said oh just get pregnant to get better it upset me so much. Glad they're finally looking beyond contraception as the answer.
I have always said it's a inflammatory disease.
I've just been called for my vaccine. I think due to my endo complications and spending so much time in hospital in the last year. So every cloud
Interesting that they mentioned asthma too. I’ve seen that said anecdotally quite often.