19 years later, finally an answer from Lap yesterday..but not a happy one!

[squidgy]

Sorry I have not posted on here for some time. I will try keep this as short as possible!

Since I was 13 I have been going to and fro from drs to gynaecologists, to gastroenterologists with the usual answers of: it's in your head, some women suffer more than others, it's IBS as endo doesn't affect your bowels.

Due to trying for a baby for the past 2 years I got referred to a gynae who has been fab! Found out I was not ovulating. HSG scan had mixed results as radiologist said my tubes were blocked, the person who did the report said everything was fine! So I asked for it to be looked into and it got finally agreed my right tube was blocked but left fine. After taking 2 months of clomid I was still not ovulating, so the Gynae said she would do a Lap to see what going on and to clarify for def the tubes situation and clear them. This had been put off by her due to previous surgery when I was little. I didn't have long to wait either...only 2 weeks! Which I know is very speedy and lucky!

Had the Lap yesterday. The actual op went fine and I was back home by 6pm. Had pain when I came round from anesthetic which they gave me something for and helped a lot. Although after op it took me a long time to be able to wee! I really felt like needed to but bladder wouldn't empty. Thankfully it eventually did so I was let home. I am sore and tired but doing and feeling better than thought I would! No painful shoulder pains yet that I have seen a lot of people on here suffer from after a Lap. Maybe it is still to come. I do have to inject myself now for the next 5 days with anti-clotting drugs due to I have a high risk of thrombosis, which have to be injected into my belly..good thing I not been operated there and it not sore! Not! I also get to wear the sexy green hospital stockings for next 5 days too!

Unfortunately it wasn't the greatest news received from the Gynaecologist though after the surgery.She wanted to see me before I left to save waiting for her next clinic date. I have SEVERE Endometriosis which is affecting my bowel, bladder, uterus and ovaries. My right ovary is totally buried by it and the tube kinked. My Left tube does not flow. To have a child, my only option is IVF!

I was sobbing my heart out when got this news. Part of it was due to the fact that it has taken 19 years to be listened to and finally get answers without being told it in my head, or that some women suffer more than others, or it only IBS! But also the shock at how bad it is in my body and that for me and my husband to have a child is only through intervention..and that is if that works.

Sorry for the moan there.

Thank you for taking the time to read my post. I appreciate it is a bit of a long one!

[Brownlow]

Hi Squidgy,

That's very tough. I guess at least you know what's causing the problems. I don't know much about TTC with endo but would it not be best to have an op to remove all the endo and then TTC?

Wishing you a speedy recovery and all the best for the future. x

[squidgy in reply to Brownlow]

Hi Brownlow. Thank you for reply to my post, much appreciated.

My Gynae who did the op said she didn't even want to attempt to remove it so I figure it was quite bad. But perhaps the inside of my uterus seems ok hence she thinks IVF be ok and my left ovary not as affected, just the tube..unlike my right one. But honest answer is I don't know. Maybe when get to talk to IVF people they may say I have to have it removed?

I hope you are ok and having as pain free days as possible. Once again thank you x

[soub in reply to squidgy]

A general gynae usually won't want to remove it. I had a general gynae who did the diagnostic laparascopy and they only looked at it to confirm diagnosis, they didn't want to touch it at all! I would really recommend referral to a specialist to get a second opinion on treatment.

[squidgy in reply to soub]

Hi soub. Thank you for that information, very useful to know. I will look into that when recovered from op. x x

[soub]

I am in a similar situation to you, and only discovered this in the last few months. I am now on waiting list for laparoscopic excision surgery with an endometriosis specialist surgeon. Hopefully they will be able to remove as much of the damaged tissue as possible. It has affected my ovaries, bowel, pouch of douglas, etc.. it's everywhere and classed as severe. They have suggested that I TTC naturally after the surgery before considering IVF.

I wonder if it is worth you asking to be referred to an endo specialist? - as this might be an option for you, if you are keen to TTC naturally if that is something you'd like to pursue.

I really feel for you and am sorry about your bad news. I am still trying to come to terms with it all myself, it has been emotionally devastating for me. Not to mention the pain and illness I've felt for some time now.

Wishing you all the best xxx

[squidgy in reply to soub]

Hello again. Really appreciate you replying twice to my post.

Sorry to hear you are in a similar situation to me. I hope you get an appointment soon for the surgery and it helps. Thanks again for the info, it is def something I will ask about and look into. I would so much like a child of our own and if that can be naturally then all the better!

Yeh it is def a hard thing to come to terms with, not only how severe endo is but the way it affecting our body. Big hugs to you x x x sorry short reply, not feeling great today x

[soub in reply to squidgy]

I hope you feel better soon, sorry to hear you are having such a tough time with it.

I heard from my Hospital and they estimated my surgery will be in August, so I have a little while to wait yet. In the mean time I am changing my diet to try and relieve symptoms, and also upping my exercise so I am as fit as possible when I go in for the op!

The endo specialist has said to keep TTC whilst on waiting list - he often has patients in my situation who end up getting pregnant whilst waiting for the op!

It's difficult knowing there is no cure for this disease, but there are plenty of options, which means there is hope!

Sending you a bug hug xxx

[squidgy in reply to soub]

Thanks x x x x Had an interesting experience last night after my shower which has affected me today.

Wow August will soon be here the way the months are flying by. Wishing you all the best for that. Yeh I wont give up ttc naturally just in case as you never know!

It def a frustrating disease this endo both physically and mentally and such a roller coaster ride! Thank goodness for this site and women like you who can get together and give the support and info we need. x

Big hugs back at you x x

[Brownlow]

I agree with Soub.

Go to your GP and tell him/her you have been diagnosed with endo and your gynae is not specialised in complex endo. In fact, your gynae should have referred you on to an endo specialist. Request referral to an accredited endo specialist. Choose one from this list bsge.org.uk/ec-BSGE-accredi... or a provisional centre here bsge.org.uk/ec-BSGE-provisi... and tell your GP which one you want to go to. Don't take no for an answer!

The endo centre will have colorectal surgeons and urologists to assist if required.

I had rampant endo removed a few years back after which my surgeon said I had a window of opportunity to conceive if I wanted to.

Good luck and take care of yourself. x

[squidgy in reply to Brownlow]

Hi Brownlow

Thank you for your reply to my post. Much appreciated.

Thanks for the web links and info. I will look into that and it useful to know that maybe there is a chance to have something done to help. Like you say, I am surprised I was not told this by the gynae on Tuesday after the surgery. I think she was just a general gynae. But the hospital I was at, she did say didn't have the same facilities as the other hospital she works at so wouldn't be able to do as much if found something. So I not sure why she hasn't mentioned trying more before IVF? Oh sorry I am not making sense with what I am typing..not feeling as good today unfortunately.

I hope that the surgery you had to remove endo helped you and gave you some peace from it all.

Thanks again for your reply, advice and support x

[Karen71]

Hi I had a very similar diagnosis after a lap 9 years ago and it is devastating so I really feel for you. However I just wanted to give some hope that I did have have my son without IVF after similar experience as tried injectable drugs first and it worked. Big hugs and good luck x

[squidgy in reply to Karen71]

Hi Karen71

Thank you for your reply. Much appreciated. That is fab news you managed to conceive naturally! Huge congratulations! Bet you were well chuffed. Gives me some hope.

Thanks for your support and wishes x

[Cat247]

Agree with all above. I had exact same diagnosis Nov last year. The gynae surgeon was offering me a bloody hysterectomy when I woke up. I said no as I want a baby. I was referred to an endo specialist as this is who you need to see, a normal gynae surgeon wouldn't and shouldn't attempt to remove severe endo. I just had my op 3 weeks ago, I had a bowel surgeon as well as like you everything was very stuck together. They successfully removed it all and even found a big rock hard lump of scar tissue in me!! Recovery is hard I won't lie but so glad I had the op as now my endo surgeon is confident about me trying naturally for a baby. IVF has been mentioned but once I'm through recovery I will be given a timeframe to try naturally. Don't just listen to that gynae surgeon get yourself sent to an endo specialist. You don't want to leave your body the way it is as that amount of endo can cause all manner of problems.xx

[Hidden in reply to Cat247]

How are you doing Cat ?

[Cat247 in reply to Hidden]

Hiya. It's been very up and down. I've been having a lot of tummy troubles and feeling sick. Went from needing ridiculous amounts of laxatives as just couldn't go and the doctor was saying I may need the district nurse out to do an enema! To now can't keep out the bathroom it's gone completely the other way. I've lost half a stone this week! Wounds all good and pain only really flares up if I do too much or walk too much so I'm hoping once my tummy settles I'll be feeling a bit better. It has been a really rough ride since the op especially getting the infection but onwards and upwards so they say. We've booked a holiday to the Caribbean for August so I'm hoping to lie on a beach and look back at everything and say it was all worth it.

Thanks for asking. How are you doing?xx

[squidgy in reply to Cat247]

Hope you get to go on Holiday in August...just what you need and deserve!

Hate it when we have to deal with so much, not only having an op but how it affects all aspects of our body! Hope your bowel settles down for you soon and the rest of your recovery goes smoothly x

[Cat247 in reply to squidgy]

Thanks hun. We'll definitely be going on holiday even if I'm not 100%. It's cost a small fortune! Lol. I've made sure my travel insurance has been upgraded so I'm fully covered. It only cost £30 for 12 month upgrade so very good. Bowel is settling now so just need the pains I have to ease and my bladder to work normally again! I don't have the feeling of when to go wee yet!

I really hope things work out for you too hun, definitely look into seeing an endo specialist even if they say the same at least you've covered all areas. Does the endo affect your life at all as it is? If not maybe a 2nd op isn't for you but a specialist could certainly give you options. Mine was so debilitating pain wise and bowel wise so I really needed that op.xx

[squidgy in reply to Cat247]

That was a good price for the upgrade in Insurance! Glad your bowel is settling down. Hope your bladder begins to work normally again for you soon. Yeh the Endo has been a big effect on my life so much so that I couldn't even do a job as a volunteer. Affects my social,work and home life. I get some "good" days and I am not as bad as some people are on here. Like you say it will be a case of getting further info and deciding what is best for me and my life and my husband and after talking to him make a decision when got all the info. Big hugs to you x x

[squidgy in reply to Cat247]

Oh bless you! You must be so sore after having all that done! Very strong and brave of you facing another op..not sure if I could.

Thank you for your response to my post. It lovely to hear from ladies like you with advice,life experience and support/understanding.

I am not sure why my gynae didn't try removing any adhesions on tubes esp the left one if the left ovary not too bad. As before the op she said due to the hsg results she was expecting to have to see if she could clear them. I know the right tube is kinked so prob out the running anyway. But she didn't do the left. Is this maybe it was too bad and no point? Or like you say a more experienced gynae endo specialist may be able to? I will def need look into this and ask my GP, even write to the gynae who did my op and see what she says. Sorry to moan on!

Thanks again and hope your recovery eases for you x x

[Mabes]

I'm so sorry. That's really horrible news. I agree about the second opinion from a specialist centre - I think that's really important to explore.

[squidgy in reply to Mabes]

Thanks Mabes. Yeh definately worth me exploring when feeling stronger emotionally and physically. Thank you for taking the time to comment on my post, much appreciated x