Just diagnosed. Where to begin??

Hello. During a lap op to remove a cyst I was diagnosed with stage four endometriosis. Doctors at the hospital didn't even bother to explain what this meant. All that was mentioned was your bowel is involved. So I've started google research, which needless to say is terrifying.

I'm lucky in one sense as apart from the pain caused by the cyst I haven't really had symptoms.

Boyfriend and family don't seem to understand, and if I hear that I need to be positive one more time I honestly think ill dissolve into tears and never stop!!

Any advice (or virtual hugs) would be greatly appreciated. I could use some non-terrifying websites to get information?? Obviously my main concern is reduced fertility :(

Xx

15 Replies

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  • Janey, The same thing happened to me. When I had my lap the doctor's didn't explain anything to me either. Actually, right after surgery they weren't even willing to wait for my husband to return, he was only downstairs, and I was to loopy to understand anything they were telling me. I was scared and wanted information. Every time I'd go online to google search I'd break down in tears. It's incredibly scary not knowing what endo could mean for you. It'll get better and endo affects every woman differently. If you are fortunate enough to not have symptoms than that's great. Fertility also varies per person and you should book an appointment with your gyn so they could tell you how this affects your fertility. In the meantime here is a video on endo: vimeo.com/m/20910143 and a virtual hug. :::: hugs::::

  • Hello Bchic,

    Thank you for the response. It is greatly appreciated. I think just having people who understand is the most helpful thing in the world.

    Yes they really need to try explain to people better what this condition means. I was in no way prepared for what Ive learned over the last few days.

    Thank you for your advice on seeing my gyne. I wasn't aware that they could tell me much more than they have already. And for the video too. Anything that has been pre-approved by others is helpful. No more Google, haha!!

    Again thank you so much. I am sure you are aware how much it helps.

    Hope you are feeling well.

    Hugs back.

    Jane xx

  • Dear Janey,

    please don't be terrified...there is help and information out there. are you in the london area?

    My advice would be to get your GP to refer you to UCLH in london where they have a special endometriosis unit. they have people trained specifically to look at the endometriosis on scans and give detailed diagnosis.

    where did you have your laparoscopy? have they suggested operating again to remove the endo?

    As the other lady mentioned, that you are not in pain is a good sign.

    be mindful of the fact that a lot of women end up in more discomfort after having surgery to remove endo...this is because it can cause scarring and adhesions.

    since you are not in pain i would suggest starting a course of acupuncture and chinese herbs...you can find a good acupuncturist by going on the british acupuncture council website and you can search on there for one local to you.

    how are your periods?

    sending you a hug :)

  • Hello Demeter,

    Thank you very much. As I said to Bchic. It is very helpful just to have people who understand. I really do appreciate it.

    I am currently in the London area, but I am due to move to Chester in the coming weeks. My jobs takes me all over the country though so trips to London for appointments would not be an issue.

    Is UCLH private or can anybody be referred?? Wow that would be so helpful. My lap was last Friday, so only six days ago. My discharge letter does mention that I will have another appointment with the consultant in three months time.

    They have not recommended further surgery. But as I say I don't really suffer with it. Do you know if they do surgery in an attempt to ease symptoms or to remove the endo? If it caused further problems it would not be a road Id like to take.

    Thank you for the advice on acupuncture. I read elsewhere that it is useful. I was just unsure if acupuncture, diet supplements and diet are used as a method to relieve pain or if it has other positive effects. Don't get me wrong I am not complaining in the slightest. I am very very lucky not to suffer with it, or with periods they have always been fine. But I am unable to differentiate between treatments that help the condition and treatments used to relieve pain?

    Again. Thank you so so much. This has been very helpful. And I feel much more positive that I won't be in the dark for the rest of my life.

    Hope you feel well.

    Hugs back.

    Jane xx

  • Hi

    I have been in your position, where the gynae gives you a quick summary when you come out of recovery whilst you are still half asleep and you're left wondering what on earth's going on and have a million questions! Although I knew in advance that it may be endo I wasn't prepared for the severity of it so the days after the lap with just the info I had been given after recovery were scary.

    I would strongly advise phoning your gynae's secretary to get a post-op appointment with your consultant so that they can go through with you what they found during the lap and what this means for you, in general and fertility etc. You don't say how recently you had the lap, but if it was very recently it may be that you are due for a post-op appointment but the hospital haven't sorted an appointment yet. Do you have a copy of your Discharge Summary from the hospital? if you do it may have some info on there about whether they were planning on contacting you etc, if you don't have a copy the secretary can find out the details for you. It may be that the gynae has passed the info for any follow-up back to your GP but as they told you it was stage 4 endo I would push for a post-op appointment with the gynae. I have severe endo and my post-op appointment was invaluable, it left me with big decisions to make, but it was an essential appointment.

    Big hugs x

    PS: Don't google, people often only comment on bad things! There are helpful information sheets on the Endometriosis UK website and the patient infomation sheet published by the College of Obs and Gynae at the link below gives good information (and there is a Guideline document behind that which is aimed at doctors if you want more info but very medical based).

    rcog.org.uk/files/rcog-corp...

  • Hi Haysis,

    You've hit the nail on the head. That is exactly how it happened with me. It was all very scary and confusing. But this blog site has been invaluable. Since all of you have been through the same I'm sure you are aware how much your responses help and how much they are appreciated. Honestly, thank you very much.

    As I mentioned above to Demeter my lap was last Friday, so only six days ago. My discharge letter does mention that I will have another appointment with the consultant in three months time. It doesn't give a lot of info. Just that it is stage four, and that there are adhesions between the pelvis and the endometrioma? Hopefully the post-op appointment will be as helpful to me as it was to you!!

    Thank you for the advice on where to go for info. I should have known better than to google symptoms!!

    Thank you again.

    Hope you feel well.

    Jane xx

  • Hi Janey -

    First, here's a virtual hug! You've had a nasty shock.

    As other people have said, there's good material to read at the RCOG website and Endometriosis UK.

    Endometriosis affects everyone differently. Some people don't have much pain, or don't have fertility problems. Others do. And others go through phases of being relatively better or worse. So the key is to find a doctor (ideally both a GP and a Gynacologist) who know your case well, and build a relationship with them so that you can get the help you need when you need it.

    Endometriosis can be a real drag at times, but lots of us here are able to get on with life and enjoy ourselves. Many people have had kids (with or without medical help), and it doesn't have to be the end of the world.

    Good luck!

  • Hello Aquitaine,

    As Ive said to all the others, thank you very much. I really appreciate everything every single one of you have said!! I am so so grateful.

    I mentioned to Demeter that I am moving up to Chester in the coming weeks. I am hoping that it might be easier to build a relationship with a GP there than it is in London. I think London is a little too fast moving and everyone is very busy.

    I feel much more positive now. Google is the host the most helpful and most devastatingly depressing invention in the world. Everything I read was doom and gloom. All of you have helped show me that is not always the reality.

    Thanks again.

    I hope you are keeping well.

    Hugs back.

    Jane xx

  • Dear Janey

    First of all, a big virtual cuddle. Accompanied by a huge bar of virtual chocolate, and a bottle or two of your drink of choice :)

    While you're eating and drinking, you'll need something to read - go to Amazon (or any other good book seller) and look for Endometriosis For Dummies (here you go, just click on the link - amazon.co.uk/Endometriosis-... ) I was diagnosed 20 years ago and this is still my go-to book; it's written in a really friendly and easy to understand way but without being scary like the internet! and as some of the more technically minded reference books can be. Also, there's a section in there especially for family and friends which will come in VERY useful...

    But mostly, as the other ladies have said...don't dwell on the most negative things of this. I'm not for one moment suggesting that you should be pumping out positive vibes about it, I completely understand that you've been hit with a lightning bolt, but endometriosis is such an individual disease, it's impossible to paint us all with the same brush. As Hayls said, go back to your gynae and get them to explain exactly what they found in there, how they think it could possibly impact on your life, and what they would suggest doing about it. It may well be that all you need to do is leave it be.

    Good luck love, and you know where we are

    C xxx

  • Dear Chrissie,

    This made me laugh out loud!!! I'm gonna take that virtual chocolate and drinks and turn them straight in to real ones ;) Gosh 20 years!! I hope it hasn't treated you too badly!!

    Thanks for the info on the book. Anything non scary that i can get hold of i'll be delighted to read.

    Well thanks to this blog I feel so much more positive. Obviously I know that there may be hard times ahead, but I also know now that it will be different for every person. Hopefully the post-op appointment will help. And in the meantime you have all given me plenty of homework ;)

    Thank you very very much. This site and everyones advice has been the most helpful information I've gotten all week. Like I said to the others I really am so grateful :)

    Big hugs right back!!!

    Jane xx

  • Ladies,

    Honestly all of your responses mean so so much. I really really appreciate all the help and advice.

    I have tried to respond to each of you separately but the website seems to be having some technical errors. I will come back later to do so.

    In the meantime hugs back to you all. And again, thank you so so much.

    Jane xxx

  • Hi Janey,

    Biggest vitual hug you can get - so sorry! It is nasty when others just don't get how this feels! I have been there and totally get where you are coming from!

    I started a blog a few years ago and it all about different options to handle endometriosis. It is positive and shows you real solutions to dealing with Endometriosis - check it out: cureendometriosis.com.

    You'll be okay sweets.

    Melissa

  • Thank you Melissa,

    I've taken a look and this will be very helpful :) Ive already tried to start following some of the advice my GP has given regarding diet. Although I do keep forgetting and eating cheese (my weakness)

    Mind yourself!!

    Big hugs back!!

    Jane xx

  • Hi Jane,

    I recently had a lap and was diagnosed with stage 4 endo. I was very groggy when the specialist talked to me afterwards too!

    I went to my doctor, and she let me read the operation notes from the hospital. Bit of an eye opener! Lots of stuff in there that he hadn't mentioned to me or my partner. Maybe you could do the same?

    Good luck in your journey!

    HUGS!

    Nicky

  • Hi Nicky,

    Thank you very much for your reply!!

    Yes its quite scary when you really have no idea what is going on!! And then when you find out what they were talking about its a real shock!!

    Once I have gathered myself and compiled all the questions that I have I think the doctors appointment will be invaluable!!

    Good luck too!!

    Hugs back!!

    Jane xx

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