Hi, I'm new here but like others we cant seem to get a straight answer from a doctor!!!! I'll tell you my story I was diagnosed with ibs,,I started getting pain around 7 years ago only happens ever now and then so did not connect the dots. It continues to get worse and worse. Then I fell pregnant with my 2nd child and had spd really badly. And after her birth (2 1\2 urs ago) the pain became a daily thing. I will say my periods only last three days most the pain I get everyday is unbearable. When I first went to the docs they said IBS and didn't take me seriously but then only 8 month ago I found out my mum had it. So armed with this new info I crawled onto the docs and told them this. They referred me o the consultant and they said to try zoladex because its a guess you have endo and zoladex will help then they will leave me a month and see what happens. Well zoladex did work I felt human. Then my god the pain came big style within a couple of weeks of ot being out of my system, Went back to consultant today. Told me they now know its endo no cure so I will have to have the marina coil fitted as zoladex is not long term. So they put that in never In my life think it would hurt as much as it did the pain was horrible but half way thro couldn't stop now!! So they said no lap! As there's no cure and I'm 28 so wont need surgery. I hope this works I cant cope with the pain and I don't understand how having periods will help my endo. I'm sorry I'm really frustrated and feel fobbed off again 😭
Zoladex and marina coil: Hi, I'm new here... - Endometriosis UK
Seek a second opinion. A lap is the only way to really diagnose endo and excision surgery is the best treatment option. The coil and Zoladex may help with symptoms but will only mask the problem. Search for a lady called Lindle on here, as she will be able to help you get a referral to a endo specialist. Good luck .
I am 29 years old, 4th stage endometriosis, discovered 3 years ago. 2 surgeries, treatment with diphereline (similar with zoladex), induce menopause. After all the pains, I finnaly find a treatment that made me forget about the pain. Visanne or Visanette. The problem is it's used and approved only in USA, and some other countries like Belgium, Greece, Turkey. Try to find a good doctor, focused on your medical history, and not on farmaceutical industry, if you know what I mean.
Lap is only way to diagnose , i have had coil for 3 years and a lap every year to remove endo that keeps growing i also had zolosex at christmas which was amazing it means i have a 90% chance of hystercomy working , i am now going to have a hysterectomy in april as my consaltant says i woulld need a lap every year . Dr Ford from Royal Surrey Hospital is amazing and is so underatanding . Please get another opinion the pain is horrible and you deserve to live pain free.
Thank you for your replies. I'm just so annoyed that they just keep fobbing me off. I may sound stupid wanting a lap, so I don't even know what stage in at. The doctor kept giving me statistics I just said I'm an individual and rach lady deals differently with Endo. I also asked her she my pain is really bad I get pain on my chest and under my ribs. I asked if it was normal for endo pain she just said it wasn't a gyne problem.they wonder why we feel so alone. Sorry to hear you guys are still struggling xx
Hi. I'm seven months in to having the Mirena fitted. I have suspected rectovaginal endo and confirmed adeno.
I decided I'd give it six months and would not be swayed by horror stories.
So here's a summary:
Insertion very painful. First weeks felt like I had a metal rod up there and first period was like a miscarriage! I went to doc who did a scan to check it was in place. It was.
Month 2; Feeling of obstruction in cervix stayed but pains went, even pelvic and lumbar pain. Had a great month
Month 3. Lots of spotting and irregular bleeding. IBS diarrhea - typical! Perod at some point medium. No flooding or clotting!!!
Month 4. Miserable. All symptoms back 3xcept for clotting and flooding. However period lasted 3 weeks and was quite heavy. Very fed up.
Month 5. No idea what cycle is now. I spotted a bit. Then nothing...The rest from inflammation made me feel much better
Calendar month 6 (no idea about menstrual cycles now!) Had a bit of IBS but had been out drinking a bit pre-xmas! Doesn't help. Had a period which was pretty normal. Lasted 7 days. No flooding or clotting.
Month 7. Nothing. No period. No IBS!!!
Month 8? Had a 3 day period. First day was heavy with bad cramps and loose bowel, but ok after that.
In short, the Mirena is definitely doing something. It's not all positive.
I have the constant feeling of a foreign object in my cervix and my uterus sometimes start cramping and I feel that everything is falling out (docs say no prolapse though!) I think sometimes my diseased uterus gets an urge to try and expel the thing but then gives up.
However, I am not constantly on painkillers, I'm not afraid to go out for fear of uncontrollable bowels or flooding and feel.less anxiety (this was a killer)
It took 7 month and next month could be like month 4, who knows!
But all in all the benefits outweigh the negative aspects.
So, stick with it. Give it 6 months even if you get a bad month or two. At one point I was about to go to ER to beg somebody to pull the thing out!
Thank you so much for your reply its horrible to listen to all your lives and think its a constant battle. Thank you for your breakdown for months this has made me feel so much better. Its give me a realistic timeframe so there are positives. 😊 I hate taking pain killers and feel like I just moan all the time but fingers crossed this does help. I suppose just like every step of Endo we just have to plod on thank you again xx
I have to agree with janeingirona about the coil, I had a miserable time with it many years ago before being under a consultant, After having it put in last sept under general anesthetic this time and having a scan straight after to check it was in place I have to say 5 months on I'm getting there! Not been plain sailing but I think we all have to weigh up what we were putting up with before and for me I have put a stone on in weight and discussed this with my consultant and we are monitoring it but I now have very occasional mild pain, light periods with some spotting. No gushing and worrying about bleeding in public! Do I have it as easy as a lot of my friends? No but it has made a huge difference to my quality of life, I saw my consultant Monday and she said I looked so much happier and relaxed. I have been with her for 2 years and she has not given up on me and to her credit made me try the least invasive meds after 1 lap. It's been a long road but at 39 if I can cope with a coil till menopause I'll be happy, I hope you get your positives with it X
Thank you mariek123 it's good to hear some positives. Best thing ive done is post on here. I don feel so alone. At least we all know how each other feels. I'm going to try and think of the positives and hopefully within time things will settle and I can be a better mum again. Thank you all for you personal stories and for taking the time to help me 😊😊 xx
Hi, I am similar to other ladies. Been diagnosed 10yrs ago. You have to fight and nag for the treatments. My first suggestion would be to get referred to a gynecologist, the second would be to check they are and endo specialist, if not request one. A coil has helped me recently however I had previously had the endo removed via Lap/lazer. I underwent Lap 5 yesterday as my deal with the consultant was I would have the coil but only if they gave me a final Lap to check how much endo was remaining. Lucky for most of it has now gone and just left with small area they are unable to remove such as bladder etc.
It's good they gave you the coli, however this has not removed any endo you already may have, you need a Lap to diagnosis and to remove if required, only then will you have a better chance of the coil actually helping.
Good luck, don't get fobbed of you have every right to push for the treatments you need xx
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