PCOS+Endometriosis

[FantasyAndHope]

Gp is investigating dd (18) for PCOS/endo
She's currently on the combination pill. Was on rivegdon now swapped to lucette. She's still having painful periods and bad pms. This is her 5th month on the pill.
Just wondering how people are treated with both?
She's very hairy

Your DD has my sympathies: I also had painful and irregular periods when I was 18 and was eventually diagnosed with both PCOS and endometriosis.

What else is the GP doing apart from giving your DD different pills to try?. Its not going to deal with any potential endo deposits that are already there, the pill will simply mask the symptoms of any underlying problems.

GP should refer your DD now to a gynaecologist for further evaluation; this is not within a GPs general remit at all. I would urge both her and you to further educate yourself re these as it will help you both re treatment decisions. Do not be fobbed off!!!. Ask questions of these people.

Endometriosis is usually diagnosed through a keyhole surgery op called a laparoscopy; its performed under general anaesthesia and its usually done as a day case. Any endo deposits seen are usually lasered out but it can recur post surgery.

Have blood tests been done to see if PCOS is present; she should have had a day 2 test to check her LH level against that of FSH. With PCOS an imbalance of LH to FSH is often seen. If periods are irregular such blood tests can be done according to calendar days.

Some good websites to look at are:-
www.verity-pcos.org.uk
www.endometriosis-uk.org/

You will need to be persistent in order to get answers.

At
Dd has had blood tests done for PCOS today. Ultrasound letter should be coming in the post soon...
She's displaying all the symptoms it'll be disappointing I suppose if she has clear blood results and a clear scan.
Her periods were pretty regular within the last year but previously haven't been regular.
There is a family history of endo. But gp only seems to be investigating PCOS unless an ultra sound will show something up? But dd mentioned that the pill hadn't worked for her period pain and she said to keep on it. She's had mefenamic and tranexamic acid and ibuprofen. Still no joy.
Dd has read lots on endo and said it can only be confirmed by a laparoscopy?

Do you know what hormone levels were tested for? If the test has been done on the wrong day the result is meaningless.

I would push for further investigations in any case even if the blood test results come back "normal"; she should not have to put up with painful periods because that is not normal and nor are irregular periods.

An ultrasound will not detect endometriosis if it is present and it is usually diagnosed through the keyhole surgery op called a laparoscopy. Many GPs are simply not up to speed at all when it comes to endometriosis; I would ask this person outright if this has actually been considered. The acid tablets that you mention are often given to such patients as well with varying degrees of success.

She needs a proper diagnosis and a referral to a gynae. I would ask the GP for a referral as these need specialist treatments, treatments outside a GPs remit.

At
She was tested for testerone FSH and LH as well as a full blood count.
The acid tablets haven't reduced her pain at all really.

at
Just wondering if you know how long to wait for blood test results?

The LH and FSH should have been done at or around day 2 in a monthly cycle. If the cycle is irregular such tests can be done according to calendar days. If LH is higher than FSH, this is one possible indicator of PCOS.

Not unfortunately all that surprised re the acid tablets because its not going to address any endometriosis deposits if they are present.

She should get the results back within a week. Do keep us posted.

At
I've done some research myself and seen the combo pill balances the hormones dd has been on this 3 months will this affect her hormone level results?
Gp didn't ask about her period cycles as she is on the pill

OP I have PCOS where is the extra hair and how much of it? The pill didn't do much to help mine at all so going to get laser.

Sch
Her face and arms. She has a no no but it's done little.
Yeah she's currently on the pill although having done research im just wondering if she'd have been better coming off the pill and having blood tests done then. She is also on oxytretacline which increases estrogen. And if her scan is clear PCOS will be dismissed

Questions to ask your doctor

You may think that if you become ill you just go the doctor and they give you a drug to take away the illness

What if Endometriosis is caused - or made worse - by things that you eat, or don't eat ?

Here are some questions to ask your doctors about Endometriosis

• What causes it ?
• How will looking at it and scraping it help me get better ?
• How can I stop it recurring ?
• Could my illness be caused by things that I eat, or don't eat ?
• What can I change about my diet and lifestyle to help my body repair itself ?

These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition.
It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.
If your doctor won't do this, try a search for BANT and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with

Search online for "anti-inflammatory diet"
This and the suggestions below may help to reduce the pain

Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

*Increase your Vitamin D
*Increase your Omega-3
*Reduce your Omega-6

Here are some relevant references that may be useful to you:
Vitamin D Wiki
Optimise Omega-6/3 Ratio
How much Omega-3 ?
15 Omega-3 Foods
What to Do About Inflammation ?
Expert Omega-3

Read more about PCOS at VitaminDWiki

Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up
Which foods make your Endometriosis worse and which help ?
.

Having gynae issues as a teen is shit. I too have PCOS and endo. The best long term treatment for endo is excision surgery by a skilled surgeon. There is no good evidence for the role of nutrition in treating it. PCOS should be treated by a gynae in conjunction with an endocrinologist. The first thing to to is ensure a normal weight, if overweight to start with. Low carb diets have been shown to be effective in achieving this.

You will have to push hard to get this investigated and tested effectively.

If painful periods are her main issue would she consider having a Mirena coil fitted? It's a treatment that works well for endometriosis andwould he suggested by a gynaecologist whilst she is waiting for further investigations.

What welshweasel wrote; there is no good evidence to suggest that endo can be treated through nutrition. However, a low GI/GL eating plan rather than low carb is good for PCOS patients (low carb is not always sustainable in the long term).

The pill has and will mask the symptoms of any underlying problems so it may not give an accurate result. All of my blood tests confirming PCOS were done when I was off the pill.

They should not discount PCOS on the basis of a clear ultrasound either as the cystic follicles (they are not cysts in the usual sense of the word) can and do disappear only to be replaced by further cystic follicles. It can also take a skilled sonographer to spot this.

Polycystic ovaries tend to be larger than normal size (a size of a walnut) and can have a "ring of pearls" appearance to it.

Estrogen can "feed" endometriosis so what she is on at present may not be helping at all.

You will need to be persistent in order to get answers.

I have both and have been through the diagnosing/treating process in the last few years. I am 33 but had symptoms since your daughters age, so its good she in the system and the issues are in the inital stages of investigation for her.

PCOS: is a collection of symptoms, any google search will tell you the diagnostic criteria if you want to know. The cysts can be seen on abdominal ultrasound if large enough, but transvaginal is gold standard and more sensitive.
I was instructed by gyneacologist to stop any contraception for 3 months prior to any blood tests as the results wouldnt reflect true levels. She also did transvaginal US and used a chart/scale to 'score' my hairiness. All together these led to diagnosis.

Endo: can only be diagnosed by laparoscopic biopsy of the tissues, however my gyneacologist started a trial treatment of progesterone only pill to see if there was any benefit as this would be the first line treatment anyway and many gyneas will do this.

The tablets your daughters been prescribed are to reduce blood flow rather than address any pain etc and often don't help very much in endometriosis.

I would push for gynea referral for her or find out if theres a gp in your surgery who has worked or has a special interest in womens health. Best of luck x

Thankyou to all that have contributed.
Dd was put on the pill to deal with the period pain however it seems that it hasn't helped with the pain at all. It's no better. She also has hot flushes etc...
R.E weight diet
Dd hasn't suffered with eating disorders for as long as I can remember as a result of bullying.
She asked the doctor about weight as according to BMI she is overweight. However her hip to waist ratio is healthy. And to be perfectly honest I'm not been bias she really doesn't look overweight. She is very active she is on cross country and track teams and netball etc at School. She goes to the gym regularly.
However she has avoidant and restrictive food intake disorder. So her diet is pretty limited and carb heavy... the doctor said this is the least of her worries given dds history with food etc... even the doctor said dd didn't look overweight and I've always been skeptical of bmi after it took 5 months for them to realise she was severely underweight but her bmi was 'normal' but she didn't look 'normal'
Dd kind of has an apple shape. She carries her weight on her boobs though. She is an E cup and very broad. (Inherited that from me)
I am careful with her weight and if she started to look 'chunky' I would suggest life style changes etc..
SIB
It's very tiring. She's in constant pain with her periods and misses school. Dd shaves but their is already hair growing back by the next day.
So I'm guessing the best thing to do is for dd to go back and ask for a referral to a gynaecologist?

That should say * has suffered

Yeah thats what I would do. I had incredibly hairy man like arms growing up which was humiliating! Along with painful, ill, hot flushed brain fogged depressing periods so I really feel for her as it is a life altering condition - but it can improve for her over time definately. She just needs to see the right person with the right knowledge.

Thinking ahead for her the sooner she gets this she can look forward to a brighter future, try to preserve her fertility as far as possible its just the earlier the better. I couldn't take any hormonal treatments due to side effects but found painkillers, antisickness meds and an antidepressant a great help and relief. Many people find the POP very helpful, or depo injection. As a last step they can essentially trick your body into a reversable 'menopause' so you don't have periods for a time which some also find a great relief.

She has options bless her, just push and push for referral x

SIB
She shaved her legs at about 12 this morning she can feel a stubble already. She shaves her face and everything. She can have her eyebrows waxed and they grow back within a week.
She gets hot flushes on her withdrawal bleed.
The thing that most concerns me is a blood test has been done whilst she's on the pill.
The pill has made her anxious and overthink and quite depressed. She has a boyfriend too and she said she completely hates physical affection since been on the pill.
She can't have depo injection due to joint/bone issues.
It's harder as she is at boarding school (weekly boarder) but both her and me are in agreement that she'd rather be treated here than where her school is.

She also suffers with bloating. Hence why her weight fluctuates.

I would stop taking the pill if she can manage and see how she is. I couldn't take it due to emotional side effects, and it giving me morning sickness type symptoms. Lesser of two evils but without I coped much better. Bloating - I could look 7months pregnant!!! They can also prescribe diuretics for this to help but again gyneacologist would be best to check her over. Yes I would be concerned re bloods taken whilst taking any hormones. She should also have prolactin checked just incase theres any endocrine (other than pcos) issues affecting her.

Epilating over time has helped alot with hair minimising. Just try to reassure her things can be done to help x

SIB
Dd asked to come off it and she told her to stay on it because it keeps her periods regular. She changed her to lucette from rivegdon

They like some bleeding to reduce risk of osteoporosis and thickening of the endometrium, however she may still have periods anyway not on the pill and if shes fully informed its totally her choice what she does or tries.

Fantasy - she only needs three bleeds a year so regularity is not important. It's only a withdrawal bleed on the pill anyway not a true period.
If she's not happy on it then she should stop.
Could you take her to a family planning clinic? More expertise on different contraception and how to use it to manage these conditions.
For example she could have a low dose pill but used in an extended regime to minimise bleeding days and symptoms.
Or a progesterone method such a implant or preferably a Mirena.

Munchy
The sexual health clinics aren't open when dd is home. She has more than 3 bleeds a year. The issue is her having more periods rather than none. She has 2/3 a month without the pill.
Dd has looked at the mirena and fancies it. However she has heard its very painful to insert and she used to have no issues with surgery etc up until recently when she had an abscess on the eye cut open and she felt everything pretty much since then it's scared her.
Her concerns is the pain and heaviness of the periods she has

I think your DD urgently needs to be referred to a gynaecologist and I would be asking the GP about this asap. Is the GP actually planning on referring?.