Feeling hopeless: Hi everyone, I've had... - Endometriosis UK

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Feeling hopeless

Jessjesssophia profile image
6 Replies

Hi everyone, I've had symptoms of endometriosis since I was 16 and got my first laporoscopy when I was 18 to confirm. I am now 24. I've had two laporoscopies now, the endometriosis is located in the pouch of Douglas which makes bowel movements & peeing (yes embarrassing!!!) really sore. I've also recently had bleeding issues but my GP isn't sure whether this was because I was on the depot injection, if it's the endometriosis itself OR because I've had treatment for CIN3 cells after an unusual smear test.

I'm feeling so sad all the time & I'm so worried about not being able to have children. I've been with my partner for 3 years & recently our sex life has been completely ruined because of the bleeding & horrendous pain.

I'm on a waiting list to get a mirena coil fitted which I really am hoping will lessen the symptoms.

I'm so sorry for the rant. I just want a hug & I feel totally hopeless.

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Jessjesssophia profile image
Jessjesssophia
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6 Replies
MeganMae profile image
MeganMae

Hello Jess, didn't want to read and run!

I had treatment for CIN3 and I was having bleeding issues for about 2 months after, if this helps lessen your worry. You seem to mimick my life, I've been with my partner for 3 years and we only had 4 months of good sex at the start and then it went down hill for the pain!

Has anyone spoke to you about treatment other than a mirena coil? I'm sorry I can't be much help with endo in POD.

Are trying for children early an option at all?

This illness can put you into a dark place where you get lost and change as a person, all I can say is keep looking forward, I know it's easy to say because it feels like all you do is wait, but it WILL get better at some point, you have to believe that it will or you will lose sight of what's important. Maybe confide in your partner more, cry, scream, vent to him to let it all out.

Big hugs your way xxx

Jessjesssophia profile image
Jessjesssophia in reply toMeganMae

Hi Megan thanks so much for your reply,

That's reassuring to know maybe the bleeding issues will subside- I've pretty much been having a period for 3 months now so getting a bit tired!

I've spoken to a couple of GPs who've been great I'm just a bit worried about the insertion but I'm so looking forward to something hopefully working.

Unfortunately we're just not ready for a family just yet although we've spoken about it a bit.

Apparently the endometriosis I have isn't a huge amount it's just in an awkward place which is why it's sore so I'm really hoping things go ok when we are ready to start trying

Big hugs to you too it's great to hear from someone with this horrible thing that it can get better! Xxx

donna_reyn profile image
donna_reyn

Hello!

Big hugs to you!!!

I haven't been diagnosed but with a specialist centre now and he's starting from scratch and ruling out all possibilities. My last gynae put me straight in for a lap and said nothing was there!! A week later I'm back to square one. I haven't had sex with my partner for over a year now and we were a very active couple so it's taking its toll but he does understand.

It sounds as though our symptoms are very similar! I'd had about 6 weeks of being fairly normal recently and able to exercise and try and live as I did before but have gone downhill in the last week so please be assured you're not alone but you will get through this!!!

Everyone is so understanding and supportive on here which does help lighten the load.

xxx

NS2408 profile image
NS2408

Hi Jess,

Sorry you are feeling so poorly and down at the moment. I understand completely your feeling of hopelessness. I have only been troubled by symptoms of endo for 2 years but I already feel like this pain will never end. But I have to stay positive and have faith that some form of treatment will help relieve the pain. My husband and I were trying for a baby but have had to stop due to pain being too bad after sex and so I am back on the pill for a few months to try and put my endo into recession.

I hope that knowing other people understand and sympathise helps you to stay positive and that the coil helps take away your pain.

Nicki

Thegirlabouttown profile image
Thegirlabouttown

When I met my partner we used to have sex even up to five times a day if we both had the day off ( weekends mainly) and now I can't even remember when we last had sex... Hopefully it was this year! He is trying to be understanding but I am sure he has moments of frustration although he says he doesn't want to cause me pain by having sex with me.

I understand your worry about children as I can't have a baby for the next 3-4 years at least and I am hoping then it won't be too late.

If there is any consolation, you are not alone, we are all in this with you. When I am down and in a dark place I put some happy music on and I go for a walk, it clears my mind. Other days I cry and I wonder what's the point of living like this when this isn't the life I signed up for?

But I have the odd good day now and then and that helps me forget about it for a while.

But do stay strong..

Jessjesssophia profile image
Jessjesssophia in reply toThegirlabouttown

Same here we were like bunnies!! It's so difficult. Really sorry to hear you're having such a time of it. Hope you get the treatment you need.

This site has been amazing so far- it's so reassuring seeing there are other people in the same boat especially when it's something that can be a bit embarrassing to talk about x

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