Endometriosis – you’re not alone

[Nurse_Nettie]

Power to you @ElleBelle and @mak_trouble891! There’s been some research into this and found an increase in muscle strength for women with PCOS.  🙂

[ElleBelle]

Awesome! It’s like a PCOS superpower :p

[mak_trouble891]

That’s so cool, I guess I that way it can be kind of seen a a positive amongst so many of the negatives 🙂 

[ckwalker]

I was diagnosed with PCOS when I was 15yo (am now 26) I’ve never had periods. I needed surgery to remove a 9cm cyst from my right ovary and was diagnosed with stage 3 endometriosis (20yo). I Am now a few weeks away from getting another cyst removed from my left ovary this time.

im very lucky to have been diagnosed as I’ve never had any apparent symptoms (such as hair, pain, weight gain).

Anyone else had/having a similar story?

[Curiosity]

Hi @ckwalker welcome to the group and thank you for sharing your experiences

[ElleBelle]

Welcome @ckwalker, glad to have another soul cyster onboard! That sounds pretty painful, can you feel when you have a cyst? I can’t feel mine, I’ve only ever seen them on an ultrasound screen.

[Kit]

Have to say never having a period sounds like a dream. I’m sure that’s the wrong approach but my current lack of has been liberating. Does everyone normally experience pain with their cysts?

[Nurse_Nettie]

The answer is no @Kit. Small ovarian cysts don’t normally cause pain. If a cyst becomes large or bursts then it can cause pain. The general rule is that any lower abdominal pain experienced by a woman should be checked by a doctor.   

[mak_trouble891]

Hi @ckwalker, thanks for sharing. I have also suffered from ovarian cysts. I haven’t experienced a lot of pain with them, however I did have one burst which was rather painful. A few years ago I was also diagnosed with endometriosis.

If you don’t mind me asking, if you didn’t have any symptoms, what led you to a diagnosis?

[ckwalker]

Thanks everyone, I do consider myself very lucky not to have expirienced the pain side of things. @mak_trouble891 my first consult was to actually get an impalanon (I was terrible at remembering to take the pill) my doctor was alarmed that I’d never had periods and referred me to a obygyn. At this stage Id been told there was a very low chance for me to have children, so (My partner of 5 years) and I decided to make the most of my obgyn services and try for a family (there’s a long waiting list on the public health system to see obygyn for fertility) about 10 months of ultrasounds, blood tests and hormone medications they found I wasn’t ovulating. Then they randomly stumbled upon a 7cm cyst (they said they thought it was my bladder). A couple of months later they did a laproscopy and a dye test. The cyst was just over 9 cm on my right ovary, with my left Fallopian tube being blocked and the endometriosis.
i can’t feel the cyst at all, I occasionally get some discomfort during intercourse but have always thought it was normal.
Im still waiting and trying to fall pregnant and hopefully after this new cyst is removed in May It will up my chances 🙂

[ElleBelle]

Wow, a cyst so big they thought it was your bladder – that’s intense @ckwalker! I worry about fertility too.  When I was first diagnosed the doctor told me to have children before I was 35 or it might not happen. I was like JEEZ, NO PRESSURE OR ANYTHING! I don’t even have a partner, so who knows what’s in my future. I’ve had to have some deep thoughts about whether I can be comfortable with the idea of not having kids, and I’m still not sure where i’m at with that comfort level. My fingers are crossed for you! I hope you’ll stick around and keep us updated. Even if it’s not on this thread, we have lots of interesting discussions and even some games 🙂

[Curiosity]

@ElleBelle @ckwalker  my mum and her sister had a lot of trouble with endometriosis and mum sat me down to advise me that if I wanted to have kids I need to have them around the age of 30 or there may be more issues with conception because of the genetic history. That was such a huge shock and the pressure! I’m too scared to get a fertility test to find out the likely hood. My partner and I have only recently talked about freezing eggs in case I’m not ready to have kids at that point

[ckwalker]

@ElleBelle @Curiosity it really is a lot of pressure! And I’ve found that the older I get the worse it gets. Watching your friends fall pregnant with their second/ third children and dodging the ‘so when are you having kids’ questions is mentally exhausting..

[mak_trouble891]

I hear you @ckwalker. When I was first diagnosed I was told to consider trying to have children sooner rather than later, but the thing was I didn’t even have a partner at that stage lol
I have personally found it difficult when people around me have had unplanned pregnancies, mainly because this is something that may not even happen for me and I very much want. I find dodging questions exhausting too, what do you find helps you to cope with the pressure?

@Curiosity like you endometriosis runs in the family. I have been told I may have to look into freezing eggs if I want to wait. Have you done much research into it? I’m a little hesitant to

[Curiosity]

@mak_trouble891 I haven’t done any further research into the egg freezing, my concern is how they get the eggs out, whether they go create an incision from the abdomen in, or go from the vagina up. It’s all a bit scary at the moment 

I haven’t had to dodge too many questions but I feel like I’m pushing myself very hard education, career and financially wise to be able to get to a sustainable place before I’m 30. When I do start trying for a family I will keep a positive mindset towards falling pregnant since I feel that if I go into it assuming the worst, it doesn’t set me up for success. That’s something I’m conscious of

[Author]

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