POS & Endo - A Miserable Combo!

[blackokapi]

Hi there,

I've been "fortunate" to have the conditions POS & Endometriosis together.

I'd lived aware of the POS for sometime, but was only diagnosed with Endo last November after fighting with the hospital specialists for years! They kept telling me I was perfectly fine, when I really wasn't, before they finally did a laparoscopy & found the cause.

Does anyone else have both these conditions? I feel very alone at times because of how sick I get & nobody else really understands what I go through.

[Meringoo]

I do!

It can be very miserable. I've been suffering with both since I was about 12, but was only diagnosed with PCOS when I was 19, and endo when I was 23. To be honest, I have found my PCOS to be relatively minor in comparison to the debilitating and excruciating pain and suffering that endo has caused me. It really has disrupted every aspect of my life. However, I am a lot better now after having a course of very strong injections (Decapeptyl) to remove the oestrogen from my body (temporarily) and so shrink the endometriosis. Before that I could barely leave the house, couldn't attend uni very often and couldn't work for the pain, depression and fatigue. I am far better than I was, but I do have moments where I feel bad.

PCOS-wise, I find that taking the combined pill helps control my symptoms (which are less troublesome than when I was in my teens), but I do still get acne and gain weight just by looking at food!

It is thought that endometriosis is present in certain PCOS women who are susceptible to the condition, partly due to the increased oestrogen levels caused by anovulation (lack of periods). However, more research has been done which suggests that endo woman have too much of a particular enzyme in the womb, which starts the growths outside of the womb.

Some endo women are extra sensitive to oestrogen, therefore taking the combined pill isn't possible. A progestogen-only pill, depo injection or implant can be much better, however these aren't suitable for PCOS symptom control. If you can tolerate the combined pill, taking 2-4 packs back-to-back then having a 7 day break can help with pain, bleeding issues, and control of endo growths. The more periods you have, the more the tissue breaks down and reforms elsewhere, causing the added pain. This is fine to do with PCOS too, because when you're on the pill, your womb doesn't build up as normal, so you don't need to shed the lining as frequently as when you're not on the pill in order for it to stay healthy and comfortable.

Personally I prefer using a combined pill as it gives better cycle control, I can take packs back-to-back (which can also improve acne and reduce headaches and other problems) and I feel happier. I have tried Cerazette progestogen-only pill twice in the past, and although it was alright, I bled constantly, causing immense pain.

With regard to your treatment, make sure you're pushy. It takes years to get a diagnosis, and you need to be given good advice and help. Depending on the severity of the endo they found, they will probably tell you to take the pill how I've mentioned above. Since you have endo, they most likely will offer you a pill such as microgynon or Lo-estrin 30, but these will probably make your PCOS symptoms worse, therefore push for an anti-androgenic pill such as Yasmin, Cilest (recommended for endo), Marvelon, Femodene (recommended for endo) or Brevinor/Ovysmen (recommended for endo).

Hope this helps. Feel free to ask me any questions as I have been through a lot with both conditions and know my stuff! xx


A really fantastic website, like Verity, but for Endo is http://endometriosis.org.uk/

[blackokapi]

Thanks for your reply!

I agree the Endo's more devastating to everyday life than the POS - my POS is controlled by the diabetic drug Metformin, I've taken this for almost 6 years now. This is why I had such a fight with the NHS for them to look deeper with me - they were like "Oh, you've got POS which you know about & the Metformin's kept them from growing/getting worse."

I can't take the combined pill - I was on it for many years in my teens because I had terrible period trouble, but they had to take me off it when I was 19 because I suffer Basilar Migraines. Since my Laparoscopy op last November, they fitted me with a Mirena coil to release a synthetic version of Progesterone into my body.

My size does bother me sometimes, although I know it's down to the hormonal mess my body's in! I try to focus on staying active & healthy - was told by a nurse last year I'm a "fit fatty". I can relate to depression as well, I've had it twice in 2 years partly due to my health crap & partly due to a job I've since left.

I'm now working towards getting into University this September, it's comforting to know there's someone else out there who goes through the same daily struggles with the "Twin Terrors" (my new name for the conditions).

Also, for many years I thought I'd been living with IBS, but since my op last year that area's been completely fine. So, my theory is it was the Endo all along since I know Endo can be mistaken for IBS.

[Meringoo]

I find that my body is nowhere near as healthy or fit (in appearance or in general) as when I was 17/18, size 8-10 and very confident. I've battled with my weight since getting very ill will PCOS from the age of 18/19, when it seemed to flare up and I put on 2 stone in about 2-3 months, with no change to my diet etc. I've pretty much remained at a size 12-14, though I was a size 16 during the flare up. It was devastating back then, and I was scared to leave the house in case anybody who knew me as a size 8 saw me twice the size! Pathetic really. But that's what it can do to you. After having far worse problems than weight gain to deal with due to the dreadful endometriosis problems, I know feel more at ease with myself and my size, though I would prefer to lose a couple of stone! I have gone up and down through very low calorie diets such as the Cambridge Weight Plan, which made me feel amazing, but when I stop it, I put a stone back on. I've just got a Wii Fit so I'll be starting on that!!!

Another thing I seem to get is fatigue. Not sure if it's from pain or just the daily struggle I have. Everybody else seems so sprightly and ready to hit the gym all night. I just want to go to bed after work!!!

The Mirena IUS is meant to be helpful for endo, but it can take 6 months for periods and side effects to settle down so don't be alarmed by that.

I think all of this makes us stronger!

[blackokapi]

I get fatigue as well - it's horrendous, I know, when you're trying simply to get through the day & all you can think about is either curling up in bed or soaking in a hot bath! I was between sizes 14-16 when I was younger & could eat what I wanted without gaining excess weight - I'm 5ft7 so looked healthy at those sizes.

Nowadays I jump between sizes 16-18 which really annoys me. I was 21 when they diagnosed my POS & 27 when they found Endo - it took me years of fighting with them to look deeper before they diagnosed the Endo & I got discrimination from 1 doctor because my partner's a woman! I'd also been in a relationship when the POS was confirmed, but I ended it because she really didn't support me although we'd been together for 6 months.

I'm slowly working on seeing myself in front of the mirror - I have loose areas of skin on my back because I had a dramatic weight loss in 2005/2006 after they gave me Metformin - without being too critical of my appearance.

You're right when you say after living through the horrid problems Endo hits you with, how you look really isn't that big a deal. On a lighter note, has your pain threshold increased? Mine has, so slowly becoming more butch despite owning 2 bunny rabbits & loving everything sappy.

[Meringoo]

It is truly amazing that it tends to be women in my experience, who have been far less understanding or bothered about these problems. No doctor should discriminate against anybody for any reason either.
My pain threshhold is definitely far higher than anybody I know, which can be annoying when somebody is complaining of a headache or sore throat in front of me. But I suppose it's not easy to measure pain.
I do get hung up over my weight and looks but at the moment, though life isn't perfect, i'm not in pain, and for that I am extremely grateful. I have noticed that since I had the lap done, my tummy muscles never get very firm despite exercise. Perhaps i'm just lazy though! And i'm not 18 any more!

[blackokapi]

It was a woman doctor who was really rude to me about my partner - she said to me "It's not as if children will be an option for you". I said back to her "well, if I can't carry kids, then she can so I've got a back-up option".

My GP who never gave up on me is a man & the best doctor I've came across to date. I think it's terrible how women do tend to be less understanding/accomodating than men with this sort of thing, but that's their own problem I guess.

Is kids something you've considered having at some point?

[Meringoo]

Yes, I would like children in the next 5 years. My gynae told me last year, after my Decapeptyl treatment to try and have at least one child before I'm 30, as it will be more difficult for me after that. However, I'm starting to feel less constricted by my endo, probably because I'm rarely in pain now (compared to practically non-stop for 6 years), and I want to make positive decisions for myself and not feel "ruled" by a condition. Things are so much clearer when you're not under a cloud of pain and discomfort.

I hope things get sorted for you. Don't be afraid to give your GP a push! x

[beaglelady]

Hi I have had endo too. I have had several surgeries and had a hyst last week as I also had adenomyosis endo in womb which was probably the cause of my miscarriages. I would strongly suggest seeing an endo specialist general gynaes are useless. I would also say try for for a family sooner with both conditions. Good luck and if you need any further advice please ask my consultant is an endo specialist so know quite a lot through him.

[blackokapi]

You guys are wicked - I was on such an emotional downer for a couple of weeks there. It was like "why me? This is so crap!" which I don't usually do at all, never mind for a timescale like that.

It's comforting to know there are other women out there with both of these problems. The thing that really didn't help was "you struggle with your weight because your coil releases hormones into your body, but if we take the coil out, the endo will run rampant again" going through my head. Just felt like I was stuck between a rock & a hard place!