Who else has endometriosis/suspected endometriosis?

Other long term effects of PCOS

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Who else has endometriosis/suspected endometriosis?

Postby Meringoo » Thu Nov 03, 2011 8:03 am

Hello lovely ladies!

I was wondering about this, because there is a possible scientific link between the two conditions. I was diagnosed with PCOS after years of struggling with my weight, irregular/non existent periods, acne and depression since the age of 11. So my diagnosis came at the age of 19 after lots of tests and paying for private consultations since my GP was dreadful. At the same time, I have always had very painful periods, pelvic pain and low backache. These symptoms became worse by my early twenties, and I was eventually referred for a laparoscopy, which confirmed endometriosis. I then went on to struggle on the combined pill, had a course of GNRH analogue treatment (Decapeptyl) which helped. Now back on the pill but have had a stress-induced endometriosis flare-up since July (not having a good year :? ).

So, although my PCOS seems to be kept at bay by my use of the combined pill (ok so I'd like to have better skin and be able to lose weight as easily as everybody else without having to limit myself to about 400 cals a day!!), my endometriosis is and has had much more of an impact on my life.

Who else has the two conditions, or suffers with endo symptoms but hasn't been diagnosed? For your info, symptoms include:

Severe Period Pain
Pelvic pain
Leg Pain,
Back Pain,
Nausea,
Fatigue,
Diarrhoea,
Bleeding from rectum
Bowel spasm
Constipation,
Swollen Abdomen,
Heavy or Irregular Bleeding,
Pain During Urination,
Painful Ovulation,
Painful Intercourse,
Painful Orgasm
Infertility

You may only get a couple of these, but as you can see, there are many nasty symptoms.

Hope you're all having a good day xx
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i have both conditions 2

Postby carrieanne watson » Thu Nov 03, 2011 7:54 pm

hi Meringoo
My name is CarrieAnne.im 23 years old and I have both conditions. 4 and a half years ago I started suffering from
Severe Period Pain
Pelvic pain
Leg Pain,
Back Pain,
Nausea,
Fatigue,
Diarrhoea,
Bleeding from rectum
Bowel spasm
Constipation,
Swollen Abdomen,
Heavy or Irregular Bleeding,
Pain During Urination,
Painful Ovulation,
Painful Intercourse,
Painful Orgasm
Infertility

Exactly what you put. Life is never fair. I have had a number of scans and ultrasound scans done. It took them 4 years to diagnose me with endometriosis . First they said oh its only irritable bowel syndrome when its actually was endometriosis . It caused me alot of stress. And its effected my life a great deal. I have lost jobs cause I could'nt manage to go to work. I am greatful that I have a supportive husband and family that put up with me.Hows ur life been effected by having both conditions?

carrieanne
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Postby Meringoo » Thu Nov 03, 2011 9:06 pm

Bless you. I know what is like to struggle with life because of endo especially. PCOS really affected me in certain ways (I'm not sure I'd like to deal with my hormones off the pill), particularly with my image and confidence, but the endo pain and horrible symptoms that nobody can see, so often don't believe...well, that's really affected my life. It took a long time to get a diagnosis, and after that I was in agony as the laparoscopy and diathermy made no difference. I nearly ended up dropping out of uni, and had so much time off it's a wonder I graduated (though my lecturers were supportive - the head of department's wife had it so in the end I was understood, thankfully), and I've had time off work due to the fatigue and depression caused by the pain and illness.

One thing that helped - though the side effects during treatment were horrible - was Decapeptyl injections. You need to be given these by a gynaecologist. I found that my pain decreased dramatically and I went back on the pill and felt loads better. That was 2 years ago. I seem to be getting worse now, unfortunately. My body reacts badly to stressful situations, so a major relationship break up and horrible situation at work haven't helped.

I find myself in a state of depression quite often. I hate being that way, it isn't me, but I just slump and feel horrid. I am also blessed with a lovely family, who are great and have taken great care of me, but there are some things that nobody can help.

I think one of the worst things is not being treated properly or taken seriously by doctors. So often I have been told to take some painkillers and get through it, or that it's just "women's problems", IBS or PMT.

Don't get me wrong, there are good things in my life, but I don't have the normality that I have longed for!!! :roll: xx
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Postby carrieanne watson » Thu Nov 03, 2011 9:42 pm

yeah it really does effect your life a lot. I was on the pill as well. I was on one pill called dianette and OMG i was aggressive and my mood swings were out of control. My mum and dad hated me being on it so I got taken off it. Then my doctor decided because I was and still am overweight I was unsuitable for being on the pill.
What is / does the Decapeptyl injection? Is it like a pain killer? I have been on strong painkillers for 5 years and to be honest I take them like sweets as my body has obviously gotten use to them.Its not normal. I use to me on 30 tablets a day. A mixture of different tablets. Like one is for spasms. Are you on a lot of medication. It makes a big difference when your boss/lecturer understands to an extent.

I am seeing a gynaecologist at the end of the month. So I am hoping that I get some help. As my symptoms are getting a lot worse. Its amazing how much our bodies react to stress. I am sorry to hear about the major break up and the situation at work.

I totally understand about being depressed and being in a slump. I am the exact same. I am currently on anti depressants and have been since I was 13 years old. It angers me so much that we have to beg and fight with the doctors to actually help us. Some doctors just see you as a thing not a human being.

Do you have facebook? It would be nice to chat with you about our conditons. xx
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Postby Meringoo » Thu Nov 03, 2011 10:27 pm

I couldn't stand Dianette. I was put on it before being diagnosed with PCOS, simply for my skin. I put on loads of weight and felt very low. Then I tried Microgynon (bad choice of pill for PCOS) and then Marvelon, which was mainly very good but then PCOS became more noticeable, and although I didn't relise it back then, I was getting endo symptoms too. I have since been on Yasmin, which I like, Cerazette progestogen-only pill, Norimin (briefly) and Cilest. Decapeptyl is a GnRH analogue which basically decreases the oestrogen in your body so endometriosis shrinks. The side effects tend to be like what you'd get with the menopause, so hot flushes, aching joints, depression, fatigue etc. I found the aching joints and weakness was the worst to be honest. My hair thinned a bit too. I only had 2 or 3 injections due to the side effects, but I felt better afterwards. I could probably have another course, but I'd need to be referred to a gynaecologist again...

Don't really use facebook, sorry! xx
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Postby beaglelady » Fri Nov 04, 2011 7:28 am

I had my hyst due to endo I had a form as well called adenomyosis in my womb. I always had my external endo excised which gives better results than laser. There are not many consultants who do it though. If any of you need advice on how to find someone who does it pm me I have been involved with endo uk. It also took me 17 years to be taken seriously and the average diagnosis time is still over 7 years. I am pain free since my hyst apart from two cysts I have developed. Zoladex caused me blood pressure problems so as a precaution I had my ovaries left in but will most probably need the left one out. As I said anyone need any help with this crappy illness just shout.
had the lot pcos endometriosis, adenomyosis and fibroids. now in early surgical menopause.
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Postby Meringoo » Fri Nov 04, 2011 8:01 am

Thank you for that. I'm hoping I won't need another lap and that I'm just having a rough year...but will definitely ask you! I hope you're not in pain today xx
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Postby ashleigh » Thu Dec 08, 2011 2:23 pm

Iv had pcos for 5 years and now the docs want to send me for a lap to check for endo. Im really worried about what it would mean to have both im only 20 years old and im at a point in my life where children are close to the future :-( it would crush me to be infertile before i even got a chance to try :'(any advice ladies? xx
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Postby fiona » Sun Jan 08, 2012 6:08 pm

Hi there

I have pcos and suspected endo. My gyno is waiting to do a lap because I am ttc for a while first. I have recently been in a lot of pain with very bad bowel symptoms so I am thinking of asking him to plan the laparoscopy.

I was told that there is no link between pcos and endo although it does seem that many women have both.

To be honest I am very apprehensive about having a lap, mostly because of the pain and recovery afterward but also because I am terrified of the anesthetic and the thought of them finding nothing. That would make me feel crazy!
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Postby Meringoo » Mon Jan 09, 2012 7:07 pm

You must have the lap - only then will you get proper treatment for endo. It won't be taken seriously until it has been confirmed. Sad but true. The anaesthetic and recovery aren't as bad as they seem. Sure, you feel groggy, but it helps when you realise the symptoms weren't in your head! Are you on the endometriosis uk discussion board by any chance? xx
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Postby Meringoo » Mon Jan 09, 2012 7:12 pm

And, there is a link between PCOS and endo, though most GPs won't really know/care. The excess oestrogen through anovulation (lack of periods) is thought to trigger endo growth. However, by controlling your cycle with the combined pill (even if you bi-cycle or tri-cycle the packets), you will help both conditions. The less you bleed, the less endo damage, but as long as you have 3 periods/bleeds at least per year, you won't get cysts or have an unhealthy womb. I know I bang on about the pill, and I know it isn't perfect, but I really do think it has helped me and many other women. Finding the right one is the tricky bit! xx
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Postby fiona » Mon Jan 09, 2012 7:48 pm

Hi yes I am on the endo board. Currently using it a lot as I have felt so bad recently. Something is not right and I need to find out what. I'm feeling quite depressed at the moment as I can't imagine holding onto my job if these symptoms continue.
So how long do you need to recover after a lap? And what is the pain like afterward?
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Postby Meringoo » Mon Jan 09, 2012 11:13 pm

Oh, I'm Ashleystar on that board, I think I replied to your post!

I was back to work within a week, but had to be careful - no lifting etc so my stitches didn't rip. The actual incisions are pretty small, but you will be swollen for a bit, and tender. It's not considered to be a major operation, but obviously you need to give yourself some time. Having said that, some women (not any I know) are back to work with a few days. You could always request that they operate during a school vacation time. I honestly recommend that you have it done though as it is the only way that endo can be diagnosed. Where are you based? xx
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Postby Cloudyrain » Mon Jan 09, 2012 11:14 pm

Ah Fiona, the pain after a lap isn't as bad as the endo pain! I felt so happy to finally have it acknowledged that it wasn't in my head it kind of made the post lap discomfort bare able! In a weird way I have found the PCOS helps the endo - as my cycles have got longer the bouts of time off work get more infrequent. Though, I have only had one period post lap and other than niggles (well, more like having barbed wire wrapped around my pelvis) I'm still awaiting my second cycle to see if there has been any improvement. Fingers crossed!x
Diagnosed PCOS and Endometriosis in 2011 after 15 years fighting!

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Postby Meringoo » Mon Jan 09, 2012 11:17 pm

^ Definitely agree re: pain from lap vs. pain from endo. Also, I had waited so many years to be taken seriously by doctors, when I was finally offered a lap, I was relieved!!! Take it, not everybody is offered it, no matter how awful their symptoms. xx
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