My lovely 14 year old has been virtually off school since last November with severe pain in lower abdomen.
She was initially admitted thinking it was appendix, then they have trawled through other conditions, IBS etc. Dr didn't initially think it was Endo as she was, in his opinion, too young so referred to Paediatrician, back in early March, who immediately referred to a Gynecology, however the appointment didn't come through for ages so we arranged a private appointment (with the same consultant she will see on the NHS) last month. He felt it was Endo, however as she had just been put on Logynon by the GP suggested tricycling this and gave her Transexamic Acid and Provera in case of breakthrough bleeding (which she has had) She has been taking 40mg of Amitriptyline and Ibuprofen since January and is still in so much pain (I cannot remember a day since last November that she hasn't been in pain) and just recently almost every day is a 9 out of 10.
It is putting so much stress on her - next year is the start of her GCSE's and on me, seeing her in so much pain all the time.
Has anyone had a laporoscopy at 14? Will they do it? Will they take her seriously as she is so young? Is it worth trying diet as control (she is putting on weight through no physical activity and comfort eating).
She feels her friends are abandoning her as she never makes any of the 'gatherings' and even on better days dreads school as she is so far behind. It makes me cry just writing this.
Anyone out there got any good positives that I can offer a little girl who currently sees a very bleak future.
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Erin-Mum
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I was 26 when I had my first lap and excision of endo tri cycled pill for 7 yrs after that before any problems arose again .
I would say as lap is only way to diagnose endo it may be right option , as I as I'm sure you do feel such a young girl on such strong meds isn't good , although it's also worth saying that you do need to give all treatment a fair chance and if it's only been a month it is with giving it a chance as there's risks with surgery too . On the school note maybe get some work sent home for her so she doesn't feel such dread about going back and maybe she could invite a couple of them in for a movie (-: hope this helps a little ! I'm sure you will get much more feedback and support here x
Thanks for your reply. It is good to learn that your lap did hold it off for another 7 years - so there could be a light at the end of this. Have to say the school have been very good and have sent work home and she has support and an 'exit card' so she can leave a lesson at will if she is in too much pain, it's just the inconsistency of the situation. She has been on Logynon for 4 1/2 months, but she is now in month 2 of 3 for the tricycling and I would agree its worth seeing this out, however, how long before you start to see any results? The breakthrough bleeding is equivalent to her normal monthly period but more painful.
On a positive note it's great to be able to read up on things and to be able to ask questions of people who really know what's what.
Thank you again
Has she had any ultrasound scans?
Although scans will often miss endometriosis, it will detect any ovarian cysts.
Yes, shes had two ultrasounds, blood tests and urine tests. Nothing conclusive, but nothing terrible either, thank goodness. Whilst we were at our surgery recently she saw a poster about ovarian cancer and said 'look mum, all my symptoms' - hopefully that's what previous tests have ruled out. Shes still very scared though.
Ah bless her, I have a 14 year old daughter too. Luckily (touch wood) she seems to be ok. Most people do seem to start with endo symptoms round about her age so that doctor is talking through his as. X
You might find it helpful to know that the charity Endometriosis UK has a youth ambassador, Alice, who has had endo sine the age of 11. Her story is here and there's a link to her blog at the bottom endometriosis-uk.org/alices... In her blog she mentions that she was diagnosed by lap aged 14. She's now 18 and I think her whole story will make both of you feel more positive about everything.
Endo UK also have a helpline which may be of use to you. Just look on the website which also lists support groups.
You also ask a question about diet. There are many differing views on this subject and if you use the search box top right for 'endo diet' you will find many threads on the subject. My own personal experience is that cutting out gluten and dairy has helped a lot. The diet also names other foods to avoid - caffeine, sugar, alcohol, meat - but I haven't stuck to this religiously, preferring to navigate my way and eat as 'clean' as possible. I eat organic as much as I can. The general aim is to reduce and eliminate toxicity, reduce inflammation and address deficiency. If nothing else, a healthy diet will be good preparation for any surgery.
Here are some sites that really helped me learn more about endo and also about things I could do to try to help myself.
If it's of any comfort, many of us all get scared that we could have something more sinister....and then feel really silly when we are diagnosed and we wasted energy worrying about something that wasn't happening!
Thank you so much for your reply - you are right, it's the not knowing and the uncertainty of everything alongside having a child that is in pain, that causes the stress. I've spent almost the entire day online searching and reading articles in a bid to find out what we are up against here and I do feel better prepared (amidst bouts of floods of tears!)
Still, onwards and upwards and it is really great the support from the community that we are already receiving.
i would hope they would consider surgery, but if they do- then my advice, as painful as it will be, is to come off the pills and have periods, try and actually be on a period or just finished one when she has the op.
it makes the endo active and much easier to locate, less likely to be missed.
Depending on when she actually started her periods -say she was 12, if it's endo it has been active for two years, and while in most cases we do find with endo, much more pain associated with just a small patch of shallow endo, than a lady who is riddled with endo will experience, it is nevertheless debilitating.
The only real restriction that applies to youngsters in terms of managing endo are the menopause drugs called GnRH drugs. These are not licenced or approved for use in children, or anyone whose bones have not yet finished growing. Which in women is approximately at age 22. So if by chance your gynaecologist suggest these types of drug however tempting they may sound, they certainly would not be suitable at her age either for diagosing suspected endo or shutting down her ovaries.
They are cancer chemo hormone drugs and do a whole lot more than just shut down ovaries. So refuse those if offered them. Come back here and we can explain in detail - infact if you want to use the search box on the green bar - type in
GnRH, Prostap, Lupron, Decapeptyl, Zoladex, etc whatever brand name is suggested to you by the surgeon.
It shouldn't be used to diagnose endo anyway.
The only effective method is surgery and it is the same for removing existing endo too.
Another thing to consider if she is having surgery this young is what to do about her near future years to get her through her exams and I would suggest that you consider the mirena coil. mirena.co.uk/public.php
While it is generally not advisable to use it in women who have not yet had a pregnancy, this is because inserting it without anaesthetic will Hurt!, but getting the chance to have it put in under a general anaesthetic solves that problem and is much better for your daughter psychologically too. Much much less traumatic for her at such a young age...indeed at any age for that matter.
the mirena takes 4-6months to stop periods then lasts up to 5 years.
No need to remember to take BC Pills, saves a fortune in tampons and towels
It is a contraceptive too (not that it will be an issue for her just yet I hope)
but it also is a much lower dose of hormone than all the other methods, at only 20% of birth control pills.
Quite honestly I found it life transforming and I so wish it had been around when i was in my teens.
There wouldn't then be any need for tranexamic acid or provera,probably not even need any pain killers at all if she is not having her periods. I very rarely take them at all.
Infact it is the same chemical as provera anyway, just that it is delivered constantly to the uterus and can stop ovulation too in some ladies which preserve egg count for later on.
For someone facing the stresses of exams ahead etc , if she can be on mirena and it works for her to stop her periods completely with no daily fuss it could be a life changer.
If you discuss it with your daughter and she thinks it something she wants to try, then do ask the surgeon at the appointment that your daughter would want mirena installed too.
The more that can be scheduled to be done in the one op - the more justification there is for funding it. I hope that makes sense.
If for some reason she doesn't react well to mirena and cannot cope with it for the 4-6months of periods that it takes for the IUD to get properly working, then it can be taken out a lot easier than it went in. However I really would suggest that even with niggles and twinges and some cramps and spotting and irregular bleeds at first (which can all happen as it settles down) it really is well worth putting up with that to have years of period free time afterwards when she needs to be getting on with life.
By stopping periods you significantly reduce the chances of new endo travelling to strange places and nesting there.
Diet control is actually very important. Tummy fat especially, because excess tummy fat is where oestrogen if manufactured and stored in women. Endo feeds on oestrogen, so taking steps to keep tummy fat right down is essential and the sooner she can get to a healthy weight range the better her chances of getting surgery and getting the oestrogen levels down. Plus all the other health benefits of keeping a trim tummy.
We don't all manage it, but it is goal and it is easier to get in to good habits when you are younger than when you are older and more stuck in your ways.
Diet does play a big role in oestrogen levels in the body. The endo diet is not a religiously strict one. It really is about knowing what foods and drinks are oestrogen and therefore endo friendly, and avoiding them. We don't want to feed the endo with anye extra oestrogen is the basic rule. Our bodies do need it for other things, and there will be a plentiful enough supply as it is without adding more.
Caffeine (Alcohol when she's older), fizzy pop are all not good for endo or indeed IBS.
stick to water and fresh fruit smoothies and certain herbal teas which are caffeine free.
the endo resolved website has a list of foods to avoid. just google endo diet. and it should be on the first page of websites to come up.
The good news is the more pain she has the less likely she has much endo, bizarre as it sounds, there is every likelyhood that one surgery will be quite sufficient to find and remove all her existing endo and in itself should improve things a lot.
It isn't however the only condition to cause similar symptoms, so if the surgery goes ahead and endo is not found - then you move on to check to see if she has a condition called adenomyosis - much easier to check for by MRi scan and is cureable with a hysterectomy eventually when she has had any children she may want to have. It doesn't threaten fertlity like endo can, and the same long term management applies
BC pills, mirena coil, arm implants etc.
And no she won't have ovarian cancer - Ovarian Cancer is mostly going to affect women after they have menopaused which is roughly aged 55 and over. When it occurs in younger women then the cause is usually down to genetics and the brca1 and 2 genes, and you would know if they run if your family because you would have had probably several close relatives succumb to breast and ovarian cancers in their 30sand 40s.
If you don't have such a family history then she need not worry about that for a few decades as yet.
Endo on the other hand is something that more than 10% of all females world wide will have. ... and a good number of us are born with it and it becomes active as soon as we start to menstruate and the old oestrogen gets pumping round the body.
in a class of 30 girls that's 3 of them who will have endo to some degree. 10 girls for every 100 girls and women staff at her school. That's probably a bit more than your daughter would imagine. There is a Poll section of the forum (look on the red bar at the top of the page- click on Polls then click on 'browse all' ) and one of the polls asks how old you were when you first had symptoms of endo - look just how many reported they had their endo pains from their early teens. Me too and i'm 46 now. The world is a very different place and there are so many more options available to improve her life prospects than us older ladies had back in the 80's or earlier.
I would definitely opt and push for the lap- at least to see what is going on inside and hopefully if endo is found then something can indeed be done to improve her life a lot and yours too as a consequence of having a much happier, pain free daughter.
If you come across anything you don't quite understand or want to check on any meds or treatments offered, come back on the forum. there are thousands of ladies with endo (all ages) and most of us have been doing battle for lot of years and many have tried all sorts of treatments. No topics are out of bounds, endo can affect any and every organ of the body, it can cause trouble with bladder and bowel too, so there really isn't a medical topic we don't discuss at some point. Use the search box on the green bar too - because there are thousands of previous discussions on all manner of topics related to endo.
It is such a depressing situation to have periods mess up every waking hour of your day but there are things that can be done for endo, you just have to prepare to battle hard to get them. So pleased for your daughter that she has a supportive mum with her every step of the way too. It makes such a difference.
And even though your daughter is only 14, she is welcome to come on the forum and ask any questions she wants to ask too. It is very hard to adjust to having endo and how it impacts on so much of life in so many ways, so she is bound to have questions crop up
in her journey with endo. Lots of teens on the forum if she wants to ask questions of the young ladies closer in age to her, or us older ones who have a bit more life and medical issue experience behind us.
Very best of luck with the gynaecologist, and remember to take notes in with you and write down note about what is discussed if you need to. The appointments are short - usually 15 minutes, so doing some homework about the options facing your daughter are worth looking at to try and persuade the surgeon to book her in for a lap op sooner rather than later.
IMPATIENT, is that correct the more pain you are in the less disease you have?
I've always read that the severity of pain has no relation to the extent of disease. So a lady with mild disease may have extreme pain and vice versa. But equally a lady with severe disease will also have severe pain?
If someone has stage four disease and severe pain. Does this mean the pain is from something else?
Wow! Thank you so much Impatient. We have just sat down and read this post together and I'm going to make notes from it to ask on Thursday. Things like the Mirena coil, which I didn't think about, as she is so young and not sexually active, I thought would not be appropriate. However, I get what you are saying about doing everything under surgery so it may be an option. Also, those GnRH drugs are new to me, but now I am getting such a better picture of what's what.
Going to start work on researching the Endo diet, again, I had no idea about the storage of Oestrogen.
That was really kind of you to cover so many areas and answer so many questions. I am so glad that I found this forum and that I can try and put ourselves in the best position to get things underway. I have been fortunate not to suffer in this way and had no idea what a big issue Endo really is! Luckily we have been part of the 7 year diagnosis average. Your comments about 3 in 30 have also made her feel better - yesterday she felt really embarrassed and didn't want anyone to know what was wrong - today she wants to raise funds and talk to the school about it!!
Thank you again for your advice and suggestions xx
So sorry to hear of your daughter's pain -it is indeed heart-breaking to watch any loved one suffer and you must feel at a loss what to do.Through this forum you have taken an important step and as you have found will get the most excellent advice from a wide range of ladies with endo.The advice already given is spot on ,so I wont repeat it,but just wanted to offer my support.
I had endo from age of 14yrs,as soon a periods started and was one of the unfortunates to be fobbed off with everything from "just womens problems" to IBS,stress and would you believe over anxiety about the pain ! I am now in my late 40s,but endo wasn't officially diagnosed until my late 20s.So please please push for your daughter to be given a lap asap.That and as Impatient says,make sure her periods are stopped or reduced as much as possible.
Please come back on forum and let us know how she is doing.Wishing you all the best in getting a diagnosis and relief of pain.
As you have probably now learnt, endo feeds off oestrogen. Anyone with endo will have oestrogen dominant over progesterone so a sensible thing to do is try everything you can to get these hormones in balance. Many if us on the forum have implemented changes in our lives in an attempt to accomplish this. I wish I had been told this after my treatment ops 7 years ago as now it has all returned.
My own personal choice at the moment is to avoid, pills, drugs and surgery and try other alternative methods to regain my health but this route is not for everyone. I feel that western medicine is good at treating emergencies but poor at treating many chronic illnesses. You will mostly find that only the symptom is addressed (if at all) and other side effects and dangers can arise. I tend to view western medicine as just one element of my recovery and not the mainstay to rely on exclusively. My doctor supports this approach and I also get acupuncture which he wholeheartedly recommends.
This article is one of the best I have found on oestrogen metabolism and encapsulates many of the things I have found and researched poliquingroup.com/ArticlesM...
I recently wrote a post on raw carrot and avocado that will also help.
Hi , I agree with cuddly barb everything I've read said there's no correlation between amount or stage of endo and amount of pain or symptoms . I would also like to add we are not medical professionals( and even they don't always know everything and aren't always right ...... All the ladies on this site know that I'm sure !) so we can only give our opinions and share our experiences good luck with everything (-:
Just back from the Consultant appointment and he said he felt it was now time to do a Lap, as the pain was not subsiding (building if anything) and as she hasn't been to school for the last 3 weeks (apparently he is the father of teenage daughters and I felt he was really empathetic and kind to her).
He then said he would get her in sooner rather than later (at which she said 'please, not the 7th June as we've got One Direction tickets that we booked a year ago!' I think for her that would be the final straw!). Anyway he referred her straight up to pre-op, where a lovely appointments lady said he'd told her not before the 9th and she was going to try and get her in for 12th June - this would have been fine and straightforward had she been 16, however, as she is only 14, she has to confirm this date with paediatrics as well, (her daughter had suffered an ovarian cyst rupture and she too was kind and helpful). Lets hope paediatrics play ball as well and we should be a step further down the road.
In the meantime we have taken on board the Endo Diet and went to the shops yesterday to start some very major lifestyle changes for her - right now she is keen to try anything but I'm not sure how long it will last as everything on the 'avoid' list would be classed as a favourite for her, but we will try, slowly at first by cutting out wheat and gluten (we've also got rice milk and almond milk, which I don't think are too bad).
So, in the meantime I will continue to read and research on this forum - quick question if anyone is there, do you take Tranexamic acid and Provera together? - I forgot to ask today and she'd taken tranxeamic and when that didn't work, provera - though neither currently has stopped breakthrough bleeding that has been going on for a week now.
Can I just say what a wonderful mum you are.... My daughter is 13 and I really feel so much sympathy for you and your daughter.
I'm pleased a date for the lap is quite soon and it doesn't interfere with the One direction concert. ( I am waiting for a lap and said I couldn't go when I'm going to Wimbledon!)
The two tablets can be taken together but because your daughter is so young, In your position I would either call your GP or local chemist to ask.
Try Rude Health almond milk - I get this from waitrose. It's much better than the alpro as it doesn't have thickeners in. The closest thing to real milk. I can't tell the difference with my porridge.
In answer to the meds question, Provera is to be taken all the time.
Tranexamic Acid is definitely not all the time. it should be maximum 4 days in a row in the month. usually reserved for your period take it just as the period starts bleeding and then you must stop when the prescription says to stop, even though it may not have stopped the bleed completely by then, it will have put enough of the chemicals inside you to work on preserving any clots intact, and thus your body is better able to cope with clotting the remaining little wounds in the days afterwards. some months are better than others I found. some months very little improvement while other months it was very effective, so it is a bit hit and miss each time.
The two drugs work quite differently. Tranexamic acid helps with blood clotting, we do call it a blood clotting drug on the forum - although in actuallity it works by preventing the destruction of clots on little wounds like endo and the normal uterus cells that bleed each month, so really it is a clot preserving drug. But it is quite a powerful one and you don't want to be on it too long at a time because it can cause problems for blood clots in veins.
Provera on the other hand is a drug that works on the uterus and endo by thinning the uterus lining and the lining on the endo patches over time and they become less prone to bleeding and may even stop the period alltogether. it does take time for that to happen, it isn't an instant thing but it will already be starting to work on the thinning process as soon as you start on them. they are taken each day, some ladies have them as a 3 monthly injection called a depo shot or depo-provera.
It does have side effects to be looking out for, but usually they are very mild if that, in most women. labeling.pfizer.com/ShowLab...
Yet again it was one of those moments when, although you are listening to what he is saying, sometimes it just doesn't go in!
So, that makes sense now, she took 4 days of Transexamic then stopped and taken now 3 days of provera. Naive as I am to all this, I just expected the bleeding to stop with the Transexamic, and when it didn't with that (which last time we saw him, he said it may not) that moving on to the Provera it would then stop. Thanks for the low down on what these do - it really is a minefield of what things are and what they do!
Anyway, we had, when we came back, a delivery of the Diary Doll pants that I ordered for her (found this on the Endometriosis uk site) and she popped them on and announced that she'd like to go to school this afternoon (a little boost to the morale to be taken seriously by the Consultant and security of new pants) So she has gone in, only for two lessons, and just before virtually all the rest of her year go off to camp this afternoon for the weekend, but still she's gone and I'm glad - not because I want to get rid of her, but I really think a 14 year old should be being a 14 year old and not stuck at home with her mum. Lets hope she will go tomorrow as well (in spite of the pain I know she is in) xx
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x
14 year old with possible Endo - chronic, consistent pain 
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