My nearly 18 y/o has a 4 year plus history of endo. Confirmed with lap. A year ago mirena coil fitted, no improvement , constant bleeding - tried desogesterol, provera and now noriday. We have been repeatedly told she should persevere with the coil, it’s the “ holy grail” of endo treatment and we should give it a year. My daughter patiently agreed to this. Last Saturday her coil was expelled. We ended up in an and e then admitted to a gynae ward. Her noriday was doubled and she will get reviewed again by the pelvic pain/ adolescent gynae team in 3 weeks.
My daughter is depressed and traumatised, previously disbelieved, told she was making things up and having as a young person, to get used to adult procedures when not yet sexually active. She’s on anti depressants and we have eventually accessed psychological support.
After this most recent admission ( previously attended an and e 4 times, twice resulting in admission to paeds ward) we are no further forward. We waited 8 hours to see a gynaecologist, my daughter waited in adult a in an and e, not paeds an and e. She was offered an internal exam and for the coil to be put back in without anaesthetic: this has only previously happened under general anaesthetic.
The Consultant gynae we saw the next day told us she didn’t have endo, she wasn’t bleeding as reported , endo wasn’t causing her bleeding or pain; she told us a and e should have checked her bleeding/ pads , and our GP and my daughter had exaggerated the bleeding . A pregnancy test was completed ( which we absolutely accept is needed) without my daughters knowledge or consent.
She was admitted to a gynae ward, waiting with others who had hysterectomy’s, were bleeding into their lungs, refusing ever to have coils fitted . She sat quietly.
Her pelvic pain team have disagreed with the idea she doesn’t have endometriosis and clarified she has bleeding and pain for gynae reasons.
Now back home we are hoping her pain will settle and the noriday will help. She remains in a lot of pain and is very low. I am at a loss at how she can continue to be treated so badly. I have previously complained and feel I am now labelled as an overprotective difficult parent, however I don’t feel this most recent experience should be accepted. What would others do? I have previously contacted PALS and our MP due to poor communication, delayed/ cancelled appointments, lack of clear care plan or care pathway including what we do if urgent concerns.
Thank you for any advice!
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Redmum2
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I can only say that I think you are doing a great job as a supportive mum, I know it is hard battling against doctors who are dismissive. We know that hospitals are over stretched at the moment and there are long waits, but there is no need for doctors to behave like that consultant Gynae did.
Was your daughter actually feeling any improvement with the coil? It is certainly not a ‘holy grail’ and while it is great for many women, others, including me, find pain is worse with it.
It is good to know that she has a supportive pelvic pain team . Poor girl, I really feel for her.
thank you so much! So very hard. No benefit from coil that we had noticed. As a nurse myself I do understand how stressed NHS is I just can’t excuse rude insensitivity! I think people get defensive as there is no clear answer or treatment but I just feel it’s ok to say we don’t know rather than get rude!
Hi, while I was waiting for my surgery some things that help me were a tens machine, gentle movement (I do pilates twice a week as it doesn't set off my pain and seems to help me manage it), changing my diet to include more veg and lower inflammatory foods. There are some really good books listed on Endometriosis UK, I basically tried a range of the suggestions until I found the above which worked for me in combo with medication prescribed. It's tough and unfair and I'm so sorry for your daughter but it seems like a common experience. I was continually led to believe I was being melodramatic until a scan showed how extensive the issue was and had to constantly advocate for myself, chase up appointments and get everything in writing.
it is v much possible for an 18 yr old to h endometriosis . a recent usg ( tvs ONLY for the sexually active)and whether a biopsy of the suspected endometriotic lesions at laparoscopy?
adolescent heavy and irregular bleeding can hv other and hormonal causes too. pco or ovarian cyst and tumor.
thx again , I believe we have had this but will check! She does have factor V Leiden which means there are some treatment she can’t have due to increased clot risk
I'm so sorry to hear the trauma your daughter has gone through, it took 11 years for them to diagnose my endometriosis and by then my uterus and bowels and sandwiched together and I had it on my pouch of Douglas and chocolate cysts. The only way of finding it was through laparoscopy have they referred your daughter for this, I had numerous scans and even a colonoscopy and none of them showed the endo.
I had the prostrap injections to put me in menopause but I think your daughter is too young for that, I also went on the pill Yasmin and that helped for about 3 years and then I've been taking provera on and off for the last 15 years but I've recently had the mirena coil fitted but I'm on prostrap to help with the bleeding whilst it gets in my system as it takes 4 months to settle in. I also had my uterus cotarized when I was 18 as I kept bleeding and that helped so maybe you could ask about that. I hope I've been of help and that you get sorted.
thank you, yes she has had lap that confirmed endometriosis. Has had desogesterol and provera now noriday- menopause injections will be next route. I get incredibly frustrated by professionals attitude and language, I just wish there was a little more empathy/ compassion and honesty!
Hi, this is my first post on here...I hope to write more tomorrow, and I'm not sure if I can help, but our situation sounds extremely similar. Our daughter is 16 and has had multiple A&E visits every year for a few years. I have repeatedly mentioned endometriosis and I have been told that she is too young to have this and that it is very rare at this age. Saw a Gynaecologist a few months ago - daughter is being treated for endometriosis (but unless the new urine or blood test methods for diagnosis become available, formal diagnosis won't be until laparoscopy by a decent specialist takes place). I'm 52 too. Finding it very difficult to make anyone understand just how ill she is, and how close to breaking point we are. My husband works very long hours and our parents are no longer alive...so it feels like it's just the 2 of us against a medical system that is having its own breakdown. I do understand how you feel ❤️❤️
Hi I’m sorry your daughter had to endure this! How did she do on the doubling up of Norgeston? I’ve been advised this also but not keen. One pill a day isn’t stopping my periods sadly and they are still regular and heavy as normal I am thinking to try Noriday, how did your daughter do on this one?
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