My poor DD 12 yrs old. History of bad periods, Tricycling the pill, but terrible PMS. Hope this gets more traffic herex

[piratecat]

Hoping putting this here about dd will get some responses of PMT management etc.
Hiya, dd has long history of terrible periods. Pain when not on periods, headaches before periods etc...

This has resulted in her now being allowed to 'tricycle' the pill after seeing the specialist at hospital, this was about 6 months ago. The aim, to stop the effects on her life of pain and time off school.
The stress all round gave us little choice, and planning her her periods to coincide with school holidays seemed to be the answer to a really difficult pattern.

(She was put on the pill with permission from the hosp before this, but was bi-cycling)

Only, it has turned out that whilst the periods are slightly improved, she still has PMS symptoms in the week before, this week terrible headaches.(this is month one, so is carrying on with another pack today)

Last month severe period pains in the week before, no pains during bleed. (this was at the end of month two of continuous pill taking but i wanted the bleed to happen in half term)

The time before, again terrible headaches which she had 3 days off school.

I went to the GP last night and she reluctantly changed the pill again. dd had been on the last one about 5 months, and has been on two others.

Should i go back to the specialist? Does anyone have any expereince of tri-cyling but still have PMS? What did you help it?
Can i safely say that this particular pill didn't cut it?

I have also had her on Magnesium OK vit for women, Evening Primrose.

Doc has also prescribed Ferrous fumerate, but a little worried this will give her tummy probs or bung her up. I had been giving her Spatone, but IF she is anemic then apparently this isn't strong enough.

Specialist has said it's not ENDO, and no signs of PCOS. If that helps, she said the symptoms are attributed to dd just having a small but hellish time of it.
Having periods is bad enough isn't it really, but dd has such alot more to suffer with them. She started when she was 9.10.

Really looking for help or advice thanks xx

Oh your poor Dd

I tricycle to manage suspected endo (I never got as far as lap but had endo style bleeding cysts, lots of pain and responded to tricycling so consultant was happy to leave it as suspected endo under manaement)

I also suffer from migraines but now on the right pill it is generally only in weeks 8 -9 that it is a big problem. Prepared to my old life I can live with it!

Different pills suit different people so persevere. I was dreadful on Microgynon but so much better on Yasmin and the pain is hugely improved.

I hope they sort her soon.

hello, i am sorry you suffer too.

dd has been on microgynon, horrid spots and low energy. Yasmin, was ok for a while, but she still had bad pains, then cileste was the last one.
It's Marvelon as of the past week. we shall see. xx

Hi piratecat,

I wondered how your DD got on the other day.

My doc used to call that marvellous marvelon. I found that pill useful for endo symptoms but again Piratecat they are only treating the symptoms rather than look properly for the cause (probably, well most likely because of her tender age). I think she will continue to have these types of problems for the next few years at least, I sincerely hope I am wrong.

Do continue with the pain and symptom diary and at the onset of any further problems, go back and demand this to be taken further.

It also concerns me that she had a ruptured cyst previously as well; How did they deal with the ruptured cyst when this happened?.

Re this part of your comment:-
"The pattern seems volatile, with the bad heads, and the one occasion of period pain in the week before one period. I asked outright and said, well i have heard that endo doesn't need to follow a specific pattern. How do you know it's not but at this stage and said the ultrasound and other scans from two yrs ago showed nothing to suggest it pointing in that direction"

That's the point. These scans were done two years ago and she needs up to date test results. Any test result done over 6 months ago should be discounted. Apart from anything else, an internal ultrasound would not detect endometriosis if it is or was there anyway.

I have had more internal ultrasounds as part of previous fertility treatment than I care to mention and it was not spotted in my uterine cavity. Subsequent laparoscopic type surgery showed me to be riddled with it. If the endometriosis deposits are properly removed (you do not want a bog standard gynae therefore doing this type of surgery) it has less chance of recurrence although it can recur anyway (mine did though not to such an extent as before). It needs specialist management and treatment.

If this continues I would bite the bullet and pay for her to see a gynae a as a private patient for an initial consultation.

Have they really not repeated the scans in the last 2 years???? At such a young age surely much can change in that time?

I really hope you can keep on pushing to get a proper diagnosis, I cannot imagine how much this is blighting your dds life

well what can i say, it's so hard to know what to do who to ask.

She has never had an internal scan. Hasn't used a tampax yet! Refuses to talk about them.
The ultrasound scan revealed the cyst that had ruptured inside the right ovary, and the mri with dye showed the type of cyst it was. To start with they were concerned her ovary was dysfunctional, and they got in touch with the childrens specialist at Bristol. DD was admitted, and rescanned at our hospital (where she sees the gynae team). The pain had stopped after two days, and they rescanned her after ten days.

If the ovary had not shrunk, then we were facing removal of that ovary, at Bristol. Luckily, it hasn't happened again. DD always says, this pain is period stuff mum, not ovary pain. She knows the difference, as that was causing screaming pain as obviously her fallopian tube was being twisted.

I will continue to chart, watch, wait and am able to get straight back there within a phonecall if i have to.

Apart from that, right now, i am being told there is little chance at this stage of them going in for a lap iyswim. I don't want her to go through that either if they are saying it's not right 'yet'. :(

What have they said about the right ovary now?. This is going from bad to worse honestly.

Your poor DD and you I feel have been given the right old runaround here.

If an internal ultrasound cannot pick up endometriosis then an external one would likely never detect it either if it is there.

They probably as well do not want to do a lap (there is also no way I would now let a bog standard gynae do any type of laparoscopic surgery on her, I would insist on finding the best gynae possible in that part of the world to do that task and get more than one specialist opinion on that also) as well now because of her age and b) because of adhesions that may well have formed after the cyst's rupture. Adhesions would have to be surgically removed; these are sticky strands that tether organs together. Drug treatments do not remove adhesions and further surgery can cause more adhesion formation.

I think that ultimately you are going to have to travel further afield (and perhaps even to somewhere like Bristol or even London) to get proper answers. You won't get that locally.

what sort of cyst are you meaning Atilla?

there are many types. this wasn't a cyst on the outside of the ovary or anywhere, it was one of the ovulatory follicles inside the ovary. So when she ovulated, it went a bit crackers and caused a bleed inside the ovary.

since that ovulation, she has had no further pain like that pain iyswim.

and of course for the last 12 months hasn't ovulated as she is on the pill.

this one is what i meant. had to google again.
hemorrhagic corpus luteum cyst.

sorry, just googling and remembering what was said.

Consultant said at our appt that when she had the scans, mri with the dye, and ultrasound that there was no sign of endometrioma. I know this was 20 months ago tho. just getting to grips with the terminology.

Sorry your DD is suffering with this especially so young :(

Fingers crossed here that the marvelon is the pill for your DD - I started on microgynon at 15 due to similar problems as your DD and was on that until I was about 21 when it became less effective and then I spent a long time trying to find another one with my GP before my Gynae put me on mercilon (which is the same as marvelon). I think marvelon/mercilon from what I've read are the better pills for gynae issues.

If your DD can take the B complex vitamin at her age then this has been good for me in terms of mood.

For her headaches I would start looking at diet - I have for the last few years followed a low carb diet and it has worked wonders for my hormone related issues included headaches and I think diet can also help with migraines if it turns out that is what your DD is having. It might be worth keeping a food diary and making sure she is drinking plenty of water.

TBH I think they are probably reluctant to do anything invasive at your DDs age and I wouldn't blame them as her body is still growing and changing and as Attila said they may cause damage.

I'm in Bristol and have been treated by Mr Peter Wardle at Southmead, who unfortunately has retired from NHS practice but still practices privately and he was fantastic.

It might be worth looking at the Verity site because although the consultant says its not PCOS there is lots of good advice about the symptoms of PCOS which are some of the ones your DD has.

I hope some of this helps - you sound like a lovely mum and I wish you were my mum when I was your DDs age and suffering with similar issues :)

I think the drs need to be taking this much more seriously and pro active, I cant believe she isnt regularly being checked after learning about her ovarian cyst. I would say she needs another mri.

At a gynae appointment I was told one of my ovaries and fallopian tubes was full of cysts. Again this was the first I knew about this, even though I had had horrendous periods and pmt all my life.

Im 45 now so a lot of proceedures maybe werent available when I was younger. Most of the times I think the drs though I was just a hysterical woman.
The differnce in care and attention I got in my 40s was massive.

First of all, you are a fantastic mother for taking this seriously and helping.

I went through hell before discovering the depo jab. For me it has taken away everything, bleeding, pain sleeplessness the lot.

Sorry I can't be of more help.

Hi piratecat,

re your comment:-
"Consultant said at our appt that when she had the scans, mri with the dye, and ultrasound that there was no sign of endometrioma".

That is good news indeed re no endometrioma but I also feel that up to date test results are needed. Any test result done over 6months ago should be discounted also.