My First Blog

Hi all “Endo” sufferers I am new to this website and pleased to have the opportunity to talk to others. I am 29 years old and was diagnosed with severe (stage 4) endometriosis 2 years ago following complications when coming off the contraceptive pill. In this time I have had 3 operations, laparoscopic procedures, my third operation most recently. In this operation my left ovary was attached to my main artery in my left leg, kidney damage, bowel damage; you name it I had it yet again, even though they done a tidy up previously 12 months before. Unfortunately the disease has escalated and despite our best efforts we haven’t been able to conceive and not likely to naturally. I am due to finish the Zoladex injections and HRT medication and start the IVF process in January which is good; I like to think they wouldn’t put me through to this if they didn’t think it was worthwhile? I am due to go back to work part time for 4 weeks following recent surgery and looking forward to some normality. I have also started fertility reflexology today and found it very good and hope it will be beneficial especially for next year and to help with the pain I still experience. What a roller-coaster ride this disease can be and every day is different, so trying to remain as positive as possible. It is hard but nice to find a support forum where I can talk to others.

8 Replies

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  • Hi

    Welcome to our little community :)

    I do hope that this was your last surgery and you wont need no more. You said it that endo is so unpredictable so dont bet it will come back. It can just stop growing exactly as it started.

    I wish you the best and soon with a baby, stay positive and this will help you a lot to achieve getting pregnant.

    Me and hubby will start trying very soon as I had a lap 2 weeks ago too.

    All the best :)

    Jo x

  • Hi Jo,

    Thank you for your kind words of support, it's good to know I'm not alone and it is great to be part of the community. Like you say being positive and trying to remain stress free is the key and fingers crossed pregnancy is just around the corner.

    How are you feeling after your lap 2 weeks ago? Hope your recovery is going well and you are feeling stronger day by day.

    All the best,

    Jules.x

  • Hello,

    Thanks for sharing your experience. After my last lap 18mths ago (having 2nd one tomorrow) the Consultant said given my severe endo (stage 4 too) when we start trying for children she thinks we have a 6month window before too much endo grows back and after that we should go straight for IVF. Having heard how difficult it can be to get IVF (all the criteria for being eligible and waiting times etc) I was wondering what the process for getting referred for IVF so quickly is? It would be useful to hear about your experience of this is you don't mind telling me how it was for you?

    Thanks and very good luck with the IVF.

    Anna xx

  • Hi Anna,

    Its so comforting to know I'm not alone and reading your story it sounds so familiar to mine.

    Firstly hope you lap has gone well today and that you are home from hospital soon and back on your feet. I hope it's good news you receive and the surgeons manage to remove some of the disease.

    Stay positive throughout all of this, I know it is easier said than done but you have got too. I found it hard and now on a low dosage of anti-depressants and wish I chose to go on them a long time ago, they are really helping me. We only have a small window (like yourself) to conceive before the endo grows back and conceiving naturally is not an option. My lead consultant referred me to Bourn Clinic in Colchester straight after my surgery and due to there being no waiting list we start in the new year. Unfortunately my husband has problems which I think has helped our case a bit. I have no idea what to expect but like to think the consultant wouldn't put me through it if he didn't think there was a chance. Maybe mention the prospect of IVF to your consultant or GP to get the ball rolling, it's worth a try. I think the waiting list and grants etc depend on the area you live in too. I have made it my goal to be a nuisance with my consultant and GP to ensure we have all the best options as ultimately I will need to have a hysterectomy in a couple of years.

    Hope I have helped, I can tell you more if you want after my first consultation in January with the clinic as a bit vague at the moment.

    All the best, Jules.x

  • Hi Jules

    I'm still quite sore as I had deep infiltration endo removed from my ligament and it was wrapped with nerves. So, the pain I get is neurological at the moment until my nerves go back to normal. So I have to be patient as everyone with this condition.

    Both you and Anna mentioned IVF, i know that womens clinic in harley street, london provide IVF free for women under 35.

    I just read it so I dont know exactly how it works, but just for reference this is the link Anna:

    londonwomensclinic.com/

    All the best and soon with a baby :D

    Jo x

  • Hi Jo,

    That amazes me how the disease even attacks the nerves, blimey it is one greedy bugger! At least the operation is done now and you can look forward to Christmas.

    Bless you, hang on in there and I hope the nerves go back to normal soon. Stick some gIrly DVDs on and put your feet up. Hope they have got you on some good pain relief. I have checked the website out and it's really informative thank you for that.

    You take care too and keep us posted with your recovery, keep that chin up.

    All the best,

    Jules.x

  • Hi girls

    I just wanted to say hi, and that we are all in it together and we have to try to stay strong and positive. Your stories all sound so similar to me. Jo, I'm glad you are starting to feel a bit better, fingers crossed this lap works for you. Jules, good luck with the ivf. We're almost at the end of our 6mth window so staying positive is getting harder, trying to distract myself with christmas instead at the moment but its difficult. Thankfully my GP seems to be on my side as im still in pain for 1 week in 4 (at least!) so I will be going back to gynae sooner than planned, although thats good and I have private medical so am able to speed things along, its scary as I know that involves big decisions.

    Anyway, just wanted to say hi, hope you are all feeling ok today

    Hayls x

  • Hi Hayls,

    Sorry about the late response and its so good to hear your story; like you say we are all in it together and we must continue to fight the bugger! Thank you for your kind words about the IVF its really kind of you. Thats great you have private medical and we wouldn't be without it now. Thank goodness your GP is on your side and please continue to remain positive about things. I really do hope you haven't got to make any big decisions just yet and that you still have options available to you; I will keep my fingers crossed for you and please continue to stay in touch with your story.

    I am back to work part time to see how things go and have already done two weeks. Its going well and I continue with the reflexology and physiotherapy, the only thing I am struggling with is, I have my third cold in a space of 4 weeks and can only put it down to being back in the office and my immune system being low which isn't surprising really.Starting to worry about the IVF too as have no idea what to expect.

    Hope you are doing ok and looking forward to the weekend.

    Take care Jules.xx

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