mother of 13 year old

[Mcewan]

Hi,
My 13 year old daughter has just been diagnosed with endometriosis. She had her period for 12 months and suffers severe pain,diahrea and vommiting regulaly. Our doctor has prescibed a drug called Primolut N.....can anyone give me some feedback about our problem and info on the drug? Thanks for any suggestions![/FONT]

[Ca Plane Pour Moi]

Hi Mcewan and welcome to BB. There are quite a few girls with Endometriosis on this forum who I am sure will be of great help in discussing this with you and your daughter. I can't really help from the Endo PoV, but I will give you some of the medical details on the drug - I hope that was the information you are after. It's UK information though, so it may not be exactly what your doctor is doing or has told you - don't worry if you're hearing different things, trust your doctor rather than the internet!

Primolut N ® Schering Health
Tablets, norethisterone 5mg.

NORETHISTERONE
Do not use progesterones in pregnancy, breastfeeding, women with conditions that may worsen fluid retention (eg epilepsy, hypertension, migrane) and in those susceptible to thromboembolisem. Avoid for patients with liver problems.

Side-effects include menstrual disturbances, PMS-like symptoms, weight gain, nausea, headaches.

Dose:
Endometriosis, 10-15mg daily for 4-6 months or longer, starting onf day 5 of cycle (if spotting occurs increase dose to 20-25mg daily, reduced once bleeding has stopped).
Dysfunctional uterine bleeding, menorrhagia, 5mg 3 times daily for 10 days to arrest bleeding; to prevent bleeding 5mg twice daily from day 19-26.
Postponement of Menstruation, 5mg 3 times daily starting 3 days before anticipated onset (menstruation occurs 2-3 days after stopping).

Other forms of Norethisterone include Utovlan® and Micronor® HRT.

[Mcewan]

Thanks for your reply.....That is pretty much as it says in the flyer that comes with the medication. I am still in the shock stage and am the type of person that needs to research everything I can to understand the problem.
My largest problem is if this drug will help with less scaring on my daughter's tubes therefore helping with fertility in the future.
any input would be appriciated!!!!

[casskid]

hi, i am on primolut. It does really help and its actually the best for fertility as it preserves the reproduction system so that later in life it will be easier to fall pregnant. I just recently asked my specialist about it as im getting to the point in life where having children are an issue. Side effects are very minimal. Headaches maybe for a week or two and some weight gain but it is really good to be on. The other thing you may want to ask her doctor about is the mirena device which helps halt the endo but this is an implant that lasts five years and you may think ur daughter too young for this. Im 24 but think its amazing. Its actually stopped my periods with the help of the primolut. If you have any more questions im happy to help. Best of luck!

[Mcewan]

Thanks for your reply Casskid. It is good to get some advice from someone who is in a similar situation. The fertility thing is of great importance and thanks for your thoughts.
I have heard of the mirena but think it may be a bit invasive for a 13 year old. Any feedback is great for her situation.
thanks again

[casskid]

If the primolut doesn't help then maybe in a few years the mirena is something she can look at. I was prescribed with two tablets a day but have managed to go down to one tablet a day and that is holding the pain and all at bay. At least she knows that the primolut will help hold it at bay and help her chances of having children one day. The only other thing i can suggest which has really helped me is going on as low fat as possible diet. I still have my chocolate but try to really cut out soft drinks and too much junk food and if she isn't already tell her to try going on no fat milk. It shoud make a difference with the dirrhea especially around menstruation. Also i've been told exercise is really good for the pain. Whether its swimming, walking, cycling, whatever really. I go to the gym between 2 and 4 days a week and on weeks where i've been lazy or can't go the pain is there but exercise does help.Hope she gets on ok. If she ever wants to know anything im happy to help. I really feel for her! It took nearly eight years before i was diagnosed.

[virgobabe]

It's a good thing that they got it now and if that drug helps for the future then that is great. it took 10years before they diagnosed me. At the age of 11 i was the same as your daughter but they wouldn't do anything for me and now i have severe endo, I wish i knew about this drug 10 years ago i would be so much better off now. Good luck with it all I know how she feels. Best wishes

[Mcewan]

Thank you both so much for your replies, I will talk to her about a low fat diet and definately go onto no fat milk.
I have had a hard time understanding how a 13 year old gets this condition but yes we are gratefull that it has been diagnosed early, why do you think it took so long for both your diagnosis ....did the doctor just shrug it off?.........she needs to have a laproscopy but we thought we should leave that for about 12 months or so till she is a bit older.....what do you think?
regards Kim

[firemansgirl]

Hi Kim, my endo wasn't diagnosed until i was 29. We had been TTC for a few years, with no result. I am glad your daughter has been diagnosed at an early age, as now treatment can commence sooner rather than later. But it is very unfortunate that she has been burdened by this debilitating disease.

Are you in a private health fund? Where are you located? The reasons i am asking is that I went through the ECCA clinic, (google search ECCA) these guys are brilliant and are the leaders in their fields. They have clinics in nearly every capital city. They are expensive, but well worth it. They use the latest in technology to remove endo. I saw ECCA Sydney, Dr Michael Cooper, he is really good. And i have been pain free for some months and my reoccurence rate of endo is now very low and my spontaneous conception rate is now much higher, than previously.

All the best and I hope it all works out for your daughter. She is very lucky to have such a caring mum!

Leis x

[Lisa]

Hi Kim,
I don't have any answers for you, but I just wanted to wish you and your daughter all the best and to send you both huge hugs
I hope things start to improve for your daughter in regards to the symptoms she has been having... as Leis said, she is very lucky to have such a caring Mum
Lisa

[Mcewan]

Dear Leis,
Yes I am in a private fund and we live in the Newcastle area....I will take a look at the web site you suggested!!!Tank you for your kind thoughts.

Regards Kim

[Mcewan]

I just wanted to post a note to all those kind people who have taken the time to send info and encouragemnet. In our busy world today it is comforting to know caring people are still out there!
thanks again Kim

[virgobabe]

The doctor just shruged it off because i was 11 at the time and then 13 and then at 15 went on the pill so the pain went away. Then when we ttc we couldn't for 2 years so thats when i went back and then it was diagnosed.

[firemansgirl]

Kim, it would be well worth a visit to Macquarie street, Sydney to see Dr Michael Cooper from ECCA. I can highly recommend him. This man is a bloody genius.

Leis x

[Mcewan]

Thanks Leis I will look into it.

[casskid]

The problem i found with most doctors is that they tell you its just period pain, especially when you are in your teens and that you should learn to live with the pain. At 23 i finally had a doctor who wanted to know why i was in so much pain and actually listened to me. Originally he thought it was from a large cyst on my ovary but he told me that while operating he would check for endo and should he find any it would be burned off. Which is what happened. I think concerning the lap for your daughter you should look at how bad the endo is and what your specialist thinks is best. I was in quite a lot of pain afterwards. I actually had to fight the nurses to go home coz it was only meant to be day surgery and they wanted to keep me overnight. I however wanyed to be at home with my mum. Thank god for my mum! I also ended up having 5 days off work and then going back on light duties. However after the inital operation pain went and with the tablets my pain has been manageable. And when it is here now i try to use heat packs instead of painkillers. Best bet is talking to the specialist but do what you think best in the end.

[Hollybolly]

Hi Kim,
I'm currently 29 and had my endo diagnosed when I was 9 - 20 yrs ago!!!!
Like you, my poor mother was just devastated and had no idea what was best for me.
Obviously 20 yrs ago, there was almost nothing known on the disease, but there is so much more out there now.
I was placed on every pill and drug possible at the time, not much helped - obviously the drugs I was on don't even get used anymore, they have much better options available now!
What I can suggest, which still continues for me now, is to take out as much dairy from her diet as you can.
The only dairy I have now is skim milk in coffee or on cereal - it has made a huge difference over the years.
The other thing I can recommend highly is regular acupuncture and chinese herbs - I know acupuncture sounds crazy for somone so young but it truly is amazing the difference it has made.
In general I am so much more 'alive' (another common condition of endo, forever feeling lethargic) and I am relatively pain free.
I live on the central coast and could give you the name of the lady I see - she is fantastic & practices in North Gosford.
My condition was quite severe where I was having a period every two weeks, and it was lasting for about 10 days - leaving me about a week out of the month where I didn't have my period - it wasn't good!
Because of the natural therapy, I now have a perfect 28 day cycle and bleed for 5-8 days - a hell of a lot better than before!
Granted, I'm older now and that side of things does get better with age, but it is well worth looking into.
Good Luck!!!

[Mcewan]

Thank you for your reply Hollybolly. I just cann't get my head around a 9 year old with this condition.....how did you get your disease diagnosed? My daughter also has had many periods that lasted for 10 to 14 days and as you say that doesn't leave very long before the next one.
The Primolut N is doing it's job, stopping her period so hopefully we are on he right track.
I will take your advice about the dairy products, but thankfully without the period she is not having the usual problems associated with them.
Once again thank you for your reply.
Kim