Does PCOS get worse with age? Can it lead to endometriosis if not treated?

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Apologies for the very long post. I was diagnosed with PCOS at 17. My periods started when I just turned 12 and were always fairly regular (25-31 days) but quite heavy and painful, and although I was a healthy weight as a child and teenager, I did suffer with bad skin/acne which made the doctors suspect PCOS. I went on the pill at 17 and stayed on this for about 11 years on and off (I’m now 35) with a couple of breaks lasting a year or so. So I have now been off the pill for 7 years (I wanted to see what my cycles were truly like) and have been taking metformin for most of this time. My weight has fluctuated as an adult and I would say I’m about a stone over where I should be. The metformin does seem to have helped overall though with weight management, but I also have problems with hair on my face and neck which started in my early 20s. This has got worse. I had a pelvic untrasound which came back clear for cysts 3 years ago. For the first 2 -3 years post-pill, I would say that my periods remained fairly ‘normal’ although I did start to have some light ovulation spotting mixed with ewcm which I was told was fairly normal as it was happening at the same time each month. For the last 4 years my cycle has definitely been more unpredictable. I still have a period every month which is usually a 25-28 day cycle but the spotting has got far worse and can sometimes last the whole of the second half of my cycle ranging from light to heavy. It’s usually brown, but has been dark red too. Because my period lasts 7-9 days, I only tend to have a couple of days at most where I’m not bleeding before ovulation spotting begins. Sometimes the spotting is just during ovulation week but increasingly it can last as I said for much of my cycle until my next period. It sometimes, but not always happens after sex too. Sex is generally ok and not painful, although I do often have twinges or pain around my ovaries after and a heavy/dragging sensation too in my pelvic region which can last for ages. I have mentioned this to different doctors and one theory for the spotting in my literal phase is that I may not be ovulating and therefore progesterone could be low. This hadn’t been tested yet. Is this quite common with PCOS? They have never seemed overly concerned though as I know PCOS can cause irregular cycles/bleeding. I have however also developed other symptoms too including bloating, pelvic pain/sharp shooting twinges in ovaries/bottom, back, leg and hip aches, upset tummy/constipation and very painful gas pains that can make me double over with the pain. Sometimes these have a pattern and sometimes not. I had one month where I was in so much pain during my period week, I was close to calling an ambulance. It felt like a terrible sharp stitch/stabbing like pain in my navel/diaphragm area. This lasted until my period ended. I couldn’t stand up properly or get comfortable. Period pain has also got worse and periods for the first few days are very heavy (frequently leak through to clothing/bedding) and I need to take codeine based medication to help. Have also noticed much larger clots too. The backache and cramps I get during my period can sometimes be unbearable. The pain also makes me feel physically sick too. I suspect going on the pill would help all these symptoms but I’m keen to start a family soon (if I can...) so there is no point. I wonder if these last 7 years of not being on pill has caused my estrogen levels to climb and this is affecting everything? I’m curious to know how common it is to have both PCOS and Endo and whether it’s possible to develop Endo as an adult? As far as I know there is no family history although my Mum has mentioned having crippling period pain which made her faint when she was younger.... although my untrasound came back clear a few years ago, is it possible to have developed cysts? I don’t know how long it takes to develop these? Or could it be that the PCOS has just got much worse and because I was on the pill for a lot of the time when I was younger, all these symptoms were probably masked? Amy light that can be shed would be much appreciated. Thank you in advance.

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Okay, I'll try to lay it down point by point.

First off, wow, I thought I was the only one so far that actually had stable/regular cycles in teen years. I kept thinking something was wrong and doctors kept brushing it off because my periods were precise to the hour sometimes and didn't get clued in until I started growing facial hair. I usually tend to see people saying they had irregular cycles. Lots of what you described was me as a teenager/young adult, particularly the constipation and bloating.

1>>My periods started when I just turned 12 and were always fairly regular (25-31 days) but quite heavy and painful, and although I was a healthy weight as a child and teenager, I did suffer with bad skin/acne which made the doctors suspect PCOS.<<

Heavy and painful, like sharp stabs in your side, period blood with clotting, sometimes nothing *but* clotting, tenderness achiness and just all round pain that only heat seems to alleviate. Anything like this familiar? It is to me.

2>> My weight has fluctuated as an adult and I would say I’m about a stone over where I should be. ... but I also have problems with hair on my face and neck which started in my early 20s.<<

This is pretty normal for PCOS. Insulin resistance, metabolic complications and diet can make it extremely difficult for us to manage weight. The hair is typical of high testosterone levels.

3>> I had a pelvic untrasound which came back clear for cysts 3 years ago.<<

This is really good, but not recent. Each period/attempt at ovulation may leave a cyst, since that's how they develop, so you might have some. That might even be what's causing the period pain. Large ones finally popping have led me to ask my mother to take me to the hospital before.

4>> For the last 4 years my cycle has definitely been more unpredictable. <<

This can be more common as PCOS-ers age and hormones are thrown further out of balance. My periods were completely stable until 24, and I only have had about a year after I got very sick and lost a lot of weight where they were stable again after that. Co-morbidities such as diabetes, endometriosis, heart issues, hypothyroidism, adrenal gland dysfunction, vitamin deficiency, and so on can develop as the metabolic system is affected. Lucky for us the PCOS can get better once menopause hits, but usually by then we have like, half a dozen other health issues.

5>> ...the spotting has got far worse and can sometimes last the whole of the second half of my cycle ranging from light to heavy. It’s usually brown, but has been dark red too. ...couple of days at most where I’m not bleeding before ovulation spotting begins. Sometimes the spotting is just during ovulation week but increasingly....It sometimes, but not always happens after sex too.<<

"Ovulation spotting" isn't something I've heard of, to be honest. Sounds like something you need to see the gynecologist for, especially the 'after sex' part. That's got me worried . The closest I can personally say is I had bleeding off and off for an entire month while on Dianette because I was taking it without break weeks.

6>> I have mentioned this to different doctors and one theory for the spotting in my literal phase is that I may not be ovulating and therefore progesterone could be low. This hadn’t been tested yet. Is this quite common with PCOS?<<

Something about the idea that the doctors you've seen proposed a theory that your progesterone is low while you have PCOS is bringing out my sarcastic side. Like "They DO know you have PCOS, right?"

Low progesterone and not ovulating is one of the big factors in PCOS and it's how a lot of women figure out they have PCOS. It's possible the doctors may be genuinely unaware of how PCOS works.

Three things to keep in mind about ovulation in general.

1. Spotting does not mean you're ovulating.

2. Periods do not mean you're ovulating.

3. Not having a period does not mean you are *not* ovulating.

I'd probably be asking for a specialist by this time, especially if you want to have a child. Endocrinologists that specialize in reproductive endocrinology are the best ones for PCOS.

7>>They have never seemed overly concerned though as I know PCOS can cause irregular cycles/bleeding. <<

Eh... *I'm* concerned. Spotting that much even when you're not on the pills. I mean, I've never even heard of 'ovulation spotting'. I'd reiterate asking for a specialist because the gynes I've seen in the last few years don't seem to be interested in going much beyond "here's a pill." I probably would have run across someone discussing ovulation spotting by now with all the research I do. Brown usually denotes old blood and more common if you haven't had a period in a while. I'd say something is going on and you should keep trying to get it sorted. PCOS gets so little support even though it's one of the most common medical conditions for women.

8>> I have however also developed other symptoms too including bloating, pelvic pain/sharp shooting twinges in ovaries/bottom, back, leg and hip aches, upset tummy/constipation and very painful gas pains that can make me double over with the pain. Sometimes these have a pattern and sometimes not.<<

Gastrointestinal issues are very, very common with PCOS, and the aches sound familiar too. Constipation can cause back legs and hip pain but it could also be from period cramping and referred pain, lots of things it could be. I've had these issues since puberty and only got worse with age, but I'm not on metformin. There's two things that come to mind;

1) Metformin is notorious for gastrointestinal side effects if you don't start at a low dosage and ease into it.

2) Inflammatory foods such as dairy, gluten, and other common allergens can cause issues for women with PCOS.

I found out women with PCOS can develop lactose intolerance and gluten issues particularly. Lactose is a form of sugar, which we weren't meant to be digesting after a certain age. Humans have a hard time digesting grains in general-- (I'd better stop now before I go off on my anthropology studies).

I've noticed since cutting out both things and drastically limiting carbohydrates in general my bloating, gas, pain, and so on has greatly decreased, but it's good to do that anyway to remove high glycemic foods from the diet. Metformin may be the culprit but side effects are supposed to go away after a while.

Anyway, managing PCOS is 80% diet because you want to reduce the insulin resistance every way possible and the major factor in that is diet by cutting out what raises blood sugar. I've had to cut out corn, rice, and potatoes as well. Make a note of what you eat and how you feel after and it'll be easy cutting out the foods you don't feel good on. And yes this can get worse as you get older.

9>> I had one month where I was in so much pain during my period week, I was close to calling an ambulance. It felt like a terrible sharp stitch/stabbing like pain in my navel/diaphragm area. .... Have also noticed much larger clots too. The backache and cramps I get during my period can sometimes be unbearable. The pain also makes me feel physically sick too. I suspect going on the pill would help all these symptoms but I’m keen to start a family soon (if I can...) so there is no point. <<

Yeah, I've had insane periods like this too, where it felt like someone had literally stabbed me in the side, and going on the pill helped but not as much as getting too sick to eat and losing a lot of weight did. Sounds like cysts popping, along with acute cramping, either one can cause that level of pain. Backaches and so on are pretty common for me...

10>> I wonder if these last 7 years of not being on pill has caused my estrogen levels to climb and this is affecting everything? <<

Usually it's testosterone that's the problem. Estrogen dominant means you aren't producing progesterone. Testosterone rises with insulin resistance, estrogen climbs in response, progesterone production is altered, cysts form which produce more testosterone, et ctr. Ask for a hormone blood panel.

11>> I’m curious to know how common it is to have both PCOS and Endo and whether it’s possible to develop Endo as an adult?

Endometriosis means that there's uterine lining tissue that backed out of the Fallopian tubes from heavy clots and reattached itself on a different organ or part of the body and is reacting to hormone changes as if it were still in the uterus. Heavy periods/bleeding in general can cause it. However, that does not mean you have it. You would need imaging and possibly exploratory surgery to determine that as from what I recall endo doesn't always show up on a scan. Considering what you've described and it's sharp and stabbing, it sounds more like ovary and cysts because those can cause a lot of pain in the areas you said. But yes, endo is one of the complications PCOS can cause, and yes, you can develop it as an adult. Ask for a vitamin D and iron panel because that might help figure out since endo causes extra bleeding and anemia tends to be common with it.

12 >>As far as I know there is no family history although my Mum has mentioned having crippling period pain which made her faint when she was younger.... <<

PCOS is passed down through heightened levels of Anti Mullerian Hormone in fetus according to recent research. nhs.uk/news/pregnancy-and-c...

My mother didn't display the visible symptoms, i.e. hair, missed ovulation, in fact hers were regular right up until she hit menopause, but she also has diabetes, hypothyroidism, and has had so much trouble with her weight in her life I'm pretty sure she had it. Not all women display the symptoms or even suspected of having it until something comes up, like say, an inability to get pregnant. She's also old enough to have hit puberty before anyone knew PCOS was a thing. There is far, far far more to the condition than the reproductive aspect.

13>> although my untrasound came back clear a few years ago, is it possible to have developed cysts?<<

See response above. Yes. Three years ago isn't very recent in regards to PCOS. Every period gives you the chance of having cysts. One of the reasons why we don't ovulate is because the cyst that releases the egg doesn't pop. When/if they do, it's incredibly painful as they tend to be larger and easily felt.

15>> Or could it be that the PCOS has just got much worse and because I was on the pill for a lot of the time when I was younger, all these symptoms were probably masked?<<

That's all the pill is good for; masking the symptoms and if you're on it early enough potentially avoiding some of the issues that can make it worse like weight gain. They don't actually balance the hormones and there's been evidence that estrogen pills can raise insulin resistance, as well. Not to mention all the metabolic issues that aren't as obvious that develop on the sly like all the comorbidities I mentioned. It affects the whole metabolic system not just the reproductive system. Diabetes in particular isn't as missed as often as the others because it's far more visible in its effects.

[Eemmpq]

I think the best thing for you would be to go back to your GP and ask for further investigations and referral to gynae. Periods should not be that painful, please don't anyone tell you that it's something to put up with.

Endometriosis is not a complication of PCOS (in that PCOS causes it) but many have both (including myself). My Endo presented itself when I was very young but I have known others for whom it did not present until will into adulthood. I also suspect that there is a family history if your mum used to faint.

The retrograde menstruation theory for the cause of Endo is one theory but as far as I'm aware, we still don't know what actually causes Endo. Fingers crossed that further research will work this one out and help manage the condition.

I noted you mentioned trying to conceive in the future- The good news is that I have Endo and PCOS and after a bit of help I have a child and my Endo is well managed 😁 If you haven't already I would try to find out if there is a GP in your practice who is more interested in these areas. I did and it was life changing for me!

[Hols969]

Not necessarily - in my view it is all down to weight and if you can maintain your weight then your symptoms may not get worse. It is not uncommon to have endo and pcos but I am 49 and do not have endo.

The cysts are only a symptom of pcos and not the cause so can come and go. Pain is not a pcos symptom but it is for endo (they can only tell by doing a laparoscopy if you have endo)