So Lost...?

[SVTSophie]

Hi all, I'm new to the Endo group. I was diagnosed in February this year whilst having my appendix removed. They found stage 4 Endo. I woke up and was told one of my tubes was already completely closed and had endo in my bowel, uterus and bladder just from what they found during that surgery. I have only had one follow up appointment since, to which the gynaecologist has just referred me to a specialist for more surgery to try and remove what they can. The gynaecologist said he would rather I have the surgery sooner rather than later as I'm already 26 and have not tried for children, he also said there might be a possibility of having a stoma fitted after the surgery.

I am just so lost as to what is going on. I don't even really understand the condition, I had never heard of it until I was diagnosed with it and all I'm worried about is my fertility. I keep having dreams about babies which is really impacting on my emotions. I'm struggling most days to stay awake and concentrate on anything.

Any advice and guidance people can offer on what might happen next would be most appreciated.... Just feel so lost and confused!

[Rachel_1666]

Hi Sophie,

Hope you have had a good day.

My diagnosis is similar to yours as I also have stage 4 endometriosis and my left tube is blocked.

I first realised my periods were all up / down so visited the GP and then after other tests can back negative they sent me for an ultrasound which is when they found two chocolate cysts one in each ovary. March 2018 I had the chocolate cysts removed and they done more investigating which is when they found out about the tube being blocked and it being stage 4. Since March I have been put on Zoladex which is a medical state of menopause so it shuts down your ovarys (temporarily) so no more endometriosis grows/ starves it - making it easier to remove. After I have finished the course of Zoladex, I will then have the seconded operation, and hopefully they can remove it to best of their ability.

I turned 25 July just gone and know exactly how you feel about children 😕all of my friends are having babies and it my dream to have them too (but I’m not even in a relationship!! So I think I need to sort that one out first haha) but I have read on the forum other ladies being successful in having children with endometriosis.

Hope that has given you a bit of an insight, and you know you aren’t alone in those thoughts.

Let me know if you have any other questions or if you want to talk 😊

Rachel xx

[SVTSophie in reply to Rachel_1666]

Hi Rachel,

Thanks for your response I'm actually at work and can't concentrate on anything ha.

That's really interesting. From what I've read so far, I've had the same experience with GPs as everyone else. I started having periods when I was 11 and they became increasingly worse over the years but just like everyone else I was told it was 'normal' or it's just something you have to 'put up with'. I never even knew Endometriosis even existed until this year.

How long did it take to have your tests and medication and things sorted? I feel like I've been fobbed off a bit. I know I was only diagnosed in February but I'm not being seen until next month and even then it's only a discussion. The gynaecologist was putting so much pressure on me with how 'severe' it was but nothing seems to have happened??

Do you know if it can still grow back after having it removed? And what does stage 4 actually mean?? I've been trying not research (google) a lot as I don't want to scare myself.

Sorry for all the questions! xx

[Rachel_1666 in reply to SVTSophie]

Hi Sophie ..

Ah yes at work is the worse time when it is quiet for me at work I am always googling!

Probably best to write a note on your phone of all your questions so when the appointment does come nexts month then you have them to hand! 😊

Sometimes it can be from starting a period early there is still no real diagnosis for why women get endometriosis- there is a lot of good information on endometriosis-uk.org

So my symptoms of month long periods, boobs being tender and very bloated stomach (when I first went to the GP was Jan 2017, I then had my ultrasounds May and July 2017 (just to see if after a cycle the chocolate cysts had changed), I then saw a gynaecologist in August 2017, then had the first operation March 2018. So yes there was quite a wait there to just remove these cysts which was a pain! As one was 5cm and the other 8cm. My GP put me on a continuous pill so I didn’t have a period, so hopefully they wouldn’t grow anymore.

And now as I said I am on the Zoladex.

I believe after it has been removed then the gynaecologist and yourself will need to look at something (like the pill which you can take back to back so not having a period / coil etc) which will be best for you long term, but again I believe it is only something like the Zoladex (temporary state of menopause which will actually stop it from growing) however due to the side effects it isn’t something which you can have long term I have been advised.

When diagnosing things medically doctors use things in stages 1-4, us being at stage 4 means the endometriosis has infiltrated/affected several organs, along with tube/s being blocked.

I know it isn’t the nicest thing to look at but I see below you already have other reassuring comments. The gynaecologist which they will be referring you to will be knowledgeable about this and what is the best way forward!

No worries on the questions ☺️

Happy to talk any time or answer any questions you may have (but do think of what you want to know for your appointment next month)

Xx

[weekari]

It's such a lot to get your head around. I'm really pleased to hear that you are going to see an endo specialist.

I think it's really important to say that endo doesn't mean infertility. Of course it can affect fertility but not for many women who have endo- and the stage of endo doesn't mean anything with fertility either. And even if it 'affects' fertility, it doesn't mean you can't have children, there are many ways people can get help. The reason we associate it with fertility is that's the reason a lot of folks end up finding it out they have it. When we have the stomach or bleeding symptoms, we're often just palmed off with IBS and bad periods but if someone can't get pregnant, then they tend to get a referral. It gives us a really skewed picture of endo.

My advice is to just focus on your health at the moment. If you feel ready to, try and build up some knowledge about endo. It's a complicated disease that many doctors don't really understand. Just do this once you can face it though- just now you're just getting your head around the diagnosis. It's a lot to take in.

There are loads of myths about endo (like it being a bad periods and fertility disease, which just isn't the case) and it's good to get some decent info about it. I've recently joined a facebook group that has loads of amazing information sheets on it- in the 'files' section. There is a lot of good information out there (but also some bad!). This forum is amazing- a total god send for me and many other women who've have a real struggle to get diagnosed. I'm sure you don't feel lucky in the slightest but that little appendix going rogue was quite possibly a little blessing in disguise as you have likely been diagnosed so much earlier and possibly easier than had that not happened.

I hope this is helpful. Just keep posting here- people are so helpful and supportive and if one post goes unnoticed, just post again, sometimes they can fall through the gaps.

x

[SVTSophie in reply to weekari]

Thank you so much for your post weekari!

I think that's why I have put off looking into the condition there are so many negative connotations associated but also with a lot of contradictions I didn't want to worry myself further or believe something that isn't true!

Just the comments on this post has made me feel so much better by talking about it with people that have or are going through the same thing!

I have also read your most recent post and cannot believe what you are going through and I seriously, whole heartedly hope that you get as much support and advice that you need as much as you give to others! x

[weekari in reply to SVTSophie]

Thank you, that's so kind of you.

It's notoriously missed and that can be such a struggle for so many. They're is a lot of hope too. I'm just in a bad mood today! 😂

X

[Tigs2017]

Hi I had severe endometriosis diagnosed 10 years ago, I have two children 8 and 5 had no issues getting pregnant but had two miscarriages in between. I’m now 44 and due to have my ovaries removed after a hysterectomy when I was 40. It’s a long road but stick with it xx