Newly Diagnosed

[Gail2016]

Hello everyone, never thought I would be on a blog asking people for advice!! I had my laparoscopy in February this year and have been diagnosed with endometriosis and to be perfectly honest I am not coping very well with this at all. I have only very recently got married and did not expect this to happen. I do not have kids just now and not planning on either anytime soon however when it comes to having kids is there a lot of different treatments to help with fertility? I have also been trying a gluten free diet as I have been reading this diet can help with the pain...has this diet helped anyone? Endometriosis seems like a very taboo subject for some reason and the forum feels like my only option to ask these questions so thanks in advance.

[JeanOsborne]

Hi Gale do you know where the endo was found? And was it removed? I was diagnosed last year and it took me a good few months to come to terms with it you'll get there it just takes time. This is a great forum for support and advice or even if you just want to have a rant.

[Gail2016 in reply to JeanOsborne]

Hi Jean, it was found on my ovaries and uterus. As far as I know they didn't remove anything. I am seeing my consultant in April. I'm finding it really difficult to come to terms with. Thanks, I might be ranting a lot then lol!

When you where diagnosed last year did your lifestyle have to change for example with your diet?

[JeanOsborne in reply to Gail2016]

No I probably should have made changes but the only thing I've changed is I've cut out caffeine. for me it's not so much the pain it was the fact that I couldn't conceive. I have severe endo. I have an 11cm endometrioma on my left ovary, my right is stuck to uterus and tube is badly block, bowel is also badly involved. Everything is stuck together. I also have suspected adenomyosis and severe cervical stenosis. Having hysterectomy, ovary removal and excision tomorrow. I'm 42now now but have been having symptoms since I was 15. If you're seeing a general gynaecologist find out what stage you are. If you are stage 3-4 you need to be referred to a specialist endo centre . This is nhs guidelines so they can't refuse. Please don't let them fob you off be strong Hun and fight for the right treatment. Keep us updated. Lindle on here here is also amazing if you need any help with referrals etc.

[Mommy2 in reply to JeanOsborne]

Good luck tomorrow!

[JeanOsborne in reply to Mommy2]

Thanks hun

[sarahgregory in reply to JeanOsborne]

Hope all goes well today X

[Gail2016 in reply to JeanOsborne]

I hope everything went as well as it could have today. You have great at giving me advice when you had this surgery to think about. I hope you are doing ok Xx

[Devils_Advocate]

Hi, I am sorry to hear that. I was incredibly upset when I was diagnosed but you learn to accept it. It has helped me by learning about the illness and knowing my options.

In relation to having children it varies from person to person. It also can depend on the location and extent of the illness. Just because you have endo it doesn't mean you won't conceive. I have severe endo, PCOS and a partially septate uterus, I was still able to have a little boy. I know a lot of suffers with children. And there are treatments available to boost fertility.

I find gluten free helps my stomach symptoms. I think a lot of suffers tend to have allergies or in tolerances. We also tend to suffer with additional problems like IBS.

X

[Gail2016 in reply to Devils_Advocate]

Thank you for replying. I think it's just the initial shock of being diagnosed after suffering such a long time - even when you know something is wrong.

I am glad there is treatment out there. When I was told I had endometriosis, I looked it up and when you see the words 'hysterectomy' and 'fertility treatment' I really started to panic.

I will start a gluten free diet if that will help me. Anything to stop feeling carp and sore!

Thank you so much for replying

[Joely21]

Hello,

It took me a long time to come to terms with it mine was diagnosed June 15 and I do still find myself questioning about it. As for having children I don't have any myself but I do know people who suffer who have had children it just depends on each individual person and the severity. I find I just experiment with taking different things out of my diet to see if they help ease the pain.

Hope this helps x

[Gail2016 in reply to Joely21]

Hi there! I feel like I have loads of questions but don't know how to ask them!!

I have read a good bit on gluten free diets?? Will try that and see if it helps me.

Is there any other advice? Anything I should or shouldn't doing? Sorry I know I'm asking a lot!!

x

[Joely21 in reply to Gail2016]

Well if you need to just say them and I'm sure I'll be able to understand what you mean. Yes definitely try the gluten free diet, sorry you may have said before when did you have your op? For a while after you need to take things easier than normal I brought a book it's absolutely brilliant tells you everything I will find it so I can tell you what it's called x

[Gail2016 in reply to Joely21]

I had my op 15th February this year. I have felt horrible since the laparoscopy though. My wounds are really infected and I'm on two courses of antibiotics. Feel fed up. That would be great if you could find out what book it was xx

[Joely21 in reply to Gail2016]

Bless your heart I know how you feel mine all went wrong and were infected as well it really knocks you back make sure you rest. It's called:

The endo patients survival guide it's around £10 but it's worth every penny let me know if you find it x

[Wwithendo]

Yes I'm going gluten free and it does help with stomach and bowel symptoms. Also helps with acid reflux.

[Gail2016 in reply to Wwithendo]

Are you just starting the gluten free diet or have you been doing it? Just wondering if you feel a difference yet being on it? Xx

[Wwithendo]

I just started it. Yes my bowels and stomach feel better when I eat gluten free. Plus I've always suffered from allergies and I produce less mucous when I follow that diet. I'm trying to see if dairy effects me too