Just wondering if any other tattlers are sufferers?
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Hello. I’ve just finally been given the official diagnosis today following a laparoscopy, I’ve known for years but I’m sure you’ll know how long of a process the diagnosis is. My gynaecologist says he’s not prepared to treat me as it’s too widespread now in my pelvis, bowels and bladder so he’s referred me to Hull to a specialist unit. How are you doing? Are you on any medication?
Thank you
Had it, it took a total hysterectomy and ovary removal to be rid of it but I’d finished having children by then.
I didn’t have really horrendous monthly pain with mine bug did have the awful flooding bleeding and my mother and sister both suffered as well .
I didn’t have really horrendous monthly pain with mine bug did have the awful flooding bleeding and my mother and sister both suffered as well .
Yes 
How did you find life after hysterectomy and ovary removal? How old were you if you don’t mind me asking? I’ve finished having children and I was told that removal or uterus and ovaries would be beneficial to reducing my pain but I’m not been 30 yet so it feels like a huge decision even thought I know I don’t want more children. I don’t usually have heavy bleeding but I have horrendous pains around ovulation and just before and during my period.
Yes
sorry to hear this. I’m fairly new to the diagnosis and have only had one operation so far but if you ever want to chat I’m happy to.Omg yes!! I've just had my 5th surgery, 2nd excision surgery in 2 years.
Wow, so sorry you’ve had to go through so many surgeries.
17 and been diagnosed with endo, been in pain since i first got my period at 11. the gynae has put me on the contraceptive pill to stop my periods, it has helped with the pain but they said they didn't want to go any further as i am 'too young'. really upsets me and unsure what to do as the nhs is a mess. they only treated me properly when i was rushing into A&E last september and i ended up being on the IV drip for two days. i've missed lots of school from it and my anxiety is also worse because of it.
Oh dear
sorry you’ve had it so rough. My gynaecologist wanted to put me on the pill but I refused hormones until he’d done a lap to see where the endo was. Once he saw how widespread it was he washed his hands of me and has now referred me to a specialist Endometriosis unit in Hull (2 hours from me). Not sure where in the uk you are but he said there were 20 centres like this all over the uk. I haven’t been yet but if I can find out any information about other centres while I’m there if you want me to?1000000% reccomend searching for a BSGE centre for an endometriosis specialist in the UK. I am under Mr Khazali
Thank you. The centre I’ve been referred to is in Hull but that’s all I know so far. Not had any paperwork through yet.
yes please please! i would love that. i’m based in Cardiff. so anything near that would be great. i’m not sure if the pill is a good way to handle it, they never really gave me information or help just told me to go on it and it has helped so much but i just get anxiety and random periods and pain. if you can find out information i’d love that. thank you so muchOh dear
Hi guys I hope you don’t mind me jumping in. So, I’m 24 now and I have a 6 year old nearly and a 2 year old.. in between having them, and before having them my periods have always been horrific. Long, heavy etc.. I got the copper coil fitted in June 2017 after my second. My periods have remained long and heavy, they last anything between 10-14 days, I get period pains 3 days before, the whole time during and 3 days afterwards. I finally went to the doctors and he took some bloods, sent me for a scan and I have an appointment in January with the gynae consultant.. the scan showed no fibroids and no Adenomyosis, they’ve said the next step is probably a laparoscopy to check for endometriosis as apparently this is the only way to diagnose.. he’s put me on tranexamic acid to lighten the bleeding and naproxen for the pain. He also suggested changing my coil to Marina as apparently the copper coil makes periods more painful and heavier but they remain the same as they always have done without the copper.. he said the usual treatment for periods like mine is hormonal contraception.. I’ve had the pill and the injection before and both made me feel absolutely crazy, I really do not want anything hormonal but is it really the only treatment available? Sorry it’s so long and well done if you got this far 
Hi ladies, I’m 36 now with one child had pains from 14, at 18 they told me I had an sti and sent me to a GUM clinic she straight away said no this is something else and got me transferred to a gynaecologist. I had a laparoscopy then endo everywhere Ive since had three laparoscopys they found stuff every time. I got told at 24 to try and have my children asap i was single living at home. Ive had mefanamic acid and trancecamix acid for the pain, blood. I had mirena fitted then 6 months later met my partner and 10 months after that I had it out as I was desperate to try having kids before I got to old. I was 29 and knew ivf had a cut off. Since then ive had the mirena put back in it stops the bleeding but not the pain really and my bowels are so messed up when I’m ovulating. But I’m done with doctors now
I had endo show up on an MRI in my low back/posterior culdesac, pelvis and hips. Apparently, it is rare for it to even show on an MRI.
My symptoms started a few years ago but have gotten worse. My mum also has endo.
I am on depo provera which has worked great up until this year where I have had more bleeding than ever and endo pain.
My symptoms: low back, pelvis and hip pain. Like a pressure or my body is being put through a grinder. It is prob a 9 out of 10. Last time I had the pain, I was on the floor hysterical and thought I was going to pass out. Sometimes a stabbing pain in my bum.
In the past five weeks, I have had four separate periods.
I am finally seeing an endo specialist tomorrow who specialises in removing the endo. Fingers crossed it goes well. My doctor has mentioned Lupron to me since Depo isn't working much now but I really don't fancy trying it as I have read so many stories of people feeling suicidal on it and lots of lawsuits. Depo is already quite controversial and is as far as I am willing to go in terms of hormones.
I feel like I need to have it removed though as I can't even have sex as it is so painful. I also think I don't know what I would do if my SO and I ever wanted a baby as I couldn't go through this pain every month trying to conceive.
Has anyone seen a specialist? What questions did you ask them?
I already have some wrote down and stuff about me but thought I would ask here too.
My symptoms started a few years ago but have gotten worse. My mum also has endo.
I am on depo provera which has worked great up until this year where I have had more bleeding than ever and endo pain.
My symptoms: low back, pelvis and hip pain. Like a pressure or my body is being put through a grinder. It is prob a 9 out of 10. Last time I had the pain, I was on the floor hysterical and thought I was going to pass out. Sometimes a stabbing pain in my bum.
In the past five weeks, I have had four separate periods.
I am finally seeing an endo specialist tomorrow who specialises in removing the endo. Fingers crossed it goes well. My doctor has mentioned Lupron to me since Depo isn't working much now but I really don't fancy trying it as I have read so many stories of people feeling suicidal on it and lots of lawsuits. Depo is already quite controversial and is as far as I am willing to go in terms of hormones.
I feel like I need to have it removed though as I can't even have sex as it is so painful. I also think I don't know what I would do if my SO and I ever wanted a baby as I couldn't go through this pain every month trying to conceive.
Has anyone seen a specialist? What questions did you ask them?
I already have some wrote down and stuff about me but thought I would ask here too.
Hi
I posted yesterday about my upcoming first appt with a specialist.
I feel so relieved and had a much better experience than I ever imagined.
He has a woman training with him for the next year or so, for the first half-hour I spoke to her - went through my history/symptoms, the medication I have taken for endo, my MRI results, options for endo, hormonal and surgery. She was very thorough and so wonderful. We both agreed that I am past the point of hormonal (depo is no longer working and I've been on it 10 years).
She went and got the Dr and had the surgery consent forms ready. Both she and he went over the surgery (lap and excision) process and answered any questions. They said surgery is about a 6-8 month wait but if I have any bad changes to get in contact.
I'm so delighted to have people finally listen. It feels like a weight lifted off my shoulders.
Good luck to anyone else that has an appt with a specialist soon.
I posted yesterday about my upcoming first appt with a specialist.
I feel so relieved and had a much better experience than I ever imagined.
He has a woman training with him for the next year or so, for the first half-hour I spoke to her - went through my history/symptoms, the medication I have taken for endo, my MRI results, options for endo, hormonal and surgery. She was very thorough and so wonderful. We both agreed that I am past the point of hormonal (depo is no longer working and I've been on it 10 years).
She went and got the Dr and had the surgery consent forms ready. Both she and he went over the surgery (lap and excision) process and answered any questions. They said surgery is about a 6-8 month wait but if I have any bad changes to get in contact.
I'm so delighted to have people finally listen. It feels like a weight lifted off my shoulders.
Good luck to anyone else that has an appt with a specialist soon.