My endometriosis story

Lmars83

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So I am currently suffering from stage 3/4 endometriosis. This has been an ongoing issue since I started trying for my first baby over 5 years ago. Before this I'd gotten pregnant unexpectedly only for it resulting in a blighted ovum discovered at my 12 week scan.

I got married in October 2009 and started trying straight away. After a year, I went to the docs. Had bloods taken (fine), semen was checked (fine), had a lap and dye - indication of mild endo and endometrioma on ovary. This was then followed up with a series of scans in order to monitor the endometriomas. From about October 2010 I started to have mid monthly cramping. It got so bad that one night I was literally on the bathroom floor thinking I was dying and got rushed to A&E only to be told I had pelvic inflammatory disease. Antibiotics and painkillers given. Mid month pain continued.

I was finally scheduled for another laparoscopy in February 2012 in order to excise and drain the endometriomas. I had a 7cm one on one ovary and a 4cm one on the other!. I also had 'kissing' ovaries. The surgeon put everything where it should be, drained the endometriomas and ablated any endometriosis and told me to just get down to business. I was pregnant come the July. I gave birth to a healthy baby boy in April 2013 - 3.5 years after I'd started trying.

I made the decision that because of my previous problems I wanted to try and get pregnant as soon as I could. However by January 2014 mid monthly cramping had returned. Back to the doctors I went about last June. I asked them to make an immediate referral back to the hospital. Again bloods taken they were fine. Sperm sample not yet checked (bloody men ;-[ !) I had a scan, which took forever, and the girl had to get someone else to have a look which I knew was not a good sign. They were talking away about what they were looking at, and basically my ovaries have gone back to the back of my uterus touching each other. Cue a breakdown on my part. Couldn't believe it had happened again after such a relatively short amount of time.

Last month I was back in hospital for another diagnostic laparoscopy. I am yet to have spoken to the actual surgeon but the nurse read out the notes to me where I was told I had severe endometriosis and one of my tubes is now blocked.

Now waiting to see the surgeon on 12th March and no doubt more surgery is going to be required.

FML!!!

Wanted to get this written down for myself but also I've noticed there's not much on here about endometriosis. Feel free to follow me, ask me anything or give me some support!

I am truly grateful that I have my baby boy as I don't know how I would be doing emotionally if I was still going through this still childless. No matter what happens I have him and he is my focus. But I want another child. I want my son to have a sibling. I want to provide my parents and my husbands parents with another grandchild. I want to complete my family.
 
So I am back the hospital on Thursday - will know more about what will be happening next :-/
 
Just wanted you to know that you are not alone. My story is almost identical to yours except that my doctor does not want me to have another surgery. My ultrasound revealed no endometriomas this time, but I do have kissing ovaries. He didn't seem alarmed with this and went ahead with an iui this month. I have been reading what little information their is about kissing ovaries, and I was excited about moving forward with the iui's, but now I feel somewhat hopeless. I am very thankful that God blessed me with my baby girl, but I want another baby so badly.
 
Just wanted you to know that you are not alone. My story is almost identical to yours except that my doctor does not want me to have another surgery. My ultrasound revealed no endometriomas this time, but I do have kissing ovaries. He didn't seem alarmed with this and went ahead with an iui this month. I have been reading what little information their is about kissing ovaries, and I was excited about moving forward with the iui's, but now I feel somewhat hopeless. I am very thankful that God blessed me with my baby girl, but I want another baby so badly.


hey there bbdreams, I haven't been on here for ages - just felt like I was becoming a bit too obsessed and needed to take a step back. I have kissing ovaries too - and I have already had these fixed once before but have gone back :sad2:

I totally feel your pain though. I so desperately want that 2nd baby - to give my 2 year old a brother or sister.

I'm actually going into hospital now on Monday for an op with 2 surgeons so its quite major - but as I understand its for ablation of endometriosis and repositioning of the ovaries - with a view of maintaining fertility first and foremost. I just hope and pray that I fall pregnant within 5/6 months like I did last time!

I was wondering how things are for you at the moment?

xx
 
Just as an update to my posts above, following the appointment with the surgeon back in march I was told that they could/would not conclusively say that one of my tubes was blocked as the tube might have just spasmed so I felt a little better after that. I also have had an MRI scan and a endometrial biopsy which both thankfully came back fine.

So now roll on Monday. I have to drink horrible stuff to empty my bowel on sunday - its the most vile thing ever and its that that I am dreading the most!!
 
Thankful I found this post! Would love to follow your story and am hoping good things for you. Hoping you successfully were able to drink the yucky potion you mentioned - will keep fingers crossed for you for tomorrow!

My lap isn't scheduled until 9/11...it's so far away! It was the soonest I could get with the surgeon between my schedule and his.
 
Thankful I found this post! Would love to follow your story and am hoping good things for you. Hoping you successfully were able to drink the yucky potion you mentioned - will keep fingers crossed for you for tomorrow!

My lap isn't scheduled until 9/11...it's so far away! It was the soonest I could get with the surgeon between my schedule and his.

Hey there, yes feel free to follow! I managed to drink what I could on Sunday didn't drink it all it was making me sick but I gathered that as it appeared to have done the job it was meant to id be ok!

I went in for laparoscopic surgery on Monday morning. I was down in surgery for about 3.5/4 hours! I was out of it for the rest of the night and had a stay in hospital. Got home Tuesday evening. Surgeon came to see me on Tuesday morning and told me everything had gone as planned, they had done what they wanted, released ovaries and put them back into position. They had also checked my tubes again and I was told they are both clear. So I am very happy at the moment and very hopeful! I'm very sore and tender at the mo but it'll hopefully be all worth it :)

Will this be your first lap to have done? It will be here before you know it! x
 
Thank you for sharing your story! I've just been diagnosed with an ovarian endometrioma. I'm now waiting to be seen by my OBGYN to see what the next step is. Terrified that it will affect my fertility :(

Best of luck to you!
 
I can't believe I didn't see this before! Thank-you for sharing! I have endometriosis as well. I'm guessing stage 1, the doctor never told me. I have horribly painful and heavy periods. Pain with bding at times. And random cramping throughout the month. I had surgery this past March and he found endometriosis on my ovary and behind my uterus.

I'm so glad to have found a thread with some stories in it!

Good luck to you with ttc over the next several months!
 
Thank you for sharing your story! I've just been diagnosed with an ovarian endometrioma. I'm now waiting to be seen by my OBGYN to see what the next step is. Terrified that it will affect my fertility :(

Best of luck to you!

Hi, I too have had endometriomas. I had them drained and excised and then went on to have my son. Have you had further advice? X
 
I can't believe I didn't see this before! Thank-you for sharing! I have endometriosis as well. I'm guessing stage 1, the doctor never told me. I have horribly painful and heavy periods. Pain with bding at times. And random cramping throughout the month. I had surgery this past March and he found endometriosis on my ovary and behind my uterus.

I'm so glad to have found a thread with some stories in it!

Good luck to you with ttc over the next several months!

This sounds exactly like me! Did you have the endo removed. After my surgery at end of June I was getting some mid monthly pain last month so I a am a little worried. I'll be going for a follow up with the surgeon in October. Is it me or is there not that much around about endometriosis? That's partly why I wrote down what I had been through! X
 
So I'm no longer under the hospital now as they have done everything they can for now as to my endo. I was told back in March that just to go back to gp now if symptoms flare up again.
So after a year of having that surgery im still not pregnant ��.
I should really go back to my gp about being re-referred to fertility clinic but to be honest I just can't be bothered with the stress of it all right now!
 
Update - my period pains fotr the last 4/5 months have been excrutiatingly painful so much so I have not been able to walk never mind going into work! Also in the last few months I have been getting mild mid monthly pain.

Saw a specialist privately (luckily someone who was worked on me previously) - he reckons the pain is being caused by scar tissue due to the extensive surgery that I had last year but he is sending me for an MRI to check things over – he said that they would usually expect occurrence of endometriosis 2-5 years after surgery – if it is just scar tissue then there is nothing they can do it will just be about managing the pain – in the meantime he has prescribed me tramadol…

If there is deep endometriosis and/or cysts then he will look to do something about that surgically- but they don’t like to do too much surgery as this causes more scar tissue etc etc – and he said once I have completed my family then if problems persist then I should consider a ‘full pelvic clearance’

Obviously still not pregnant and my son is now over 3.5 years old. Recently we had sperm analysis done that came back fine - blood test for AMH done which I was told was satisfactory - think the level was 13.9 or something like that. So fertility wise my only next step is self funded IVF - 1. i need to get some money together first and 2. i could do with losing a few stone in weight!

So currently living my life in limbo....
 
Between having an mri scan back in november and going back to the consultant i found out i was pregnant!

I was however told by the consultant that i now had endo in the uterine wall and to be honest i can't remember much else as I was jist so happy that I was now pregnant that was all i could think about!

So after 3 years of trying, with severe endometriosis, I am now nearly 14 weeks pregnant :)
 
Just read your thread. I too had a laparoscopy done for endo before I conceived my first. We are currently ttc #2 and I have a feeling the endo is back as I have the same symptoms you mentioned. Was really just a quick one to say thank you for sharing your story as it gave me hope. Also congrats on your liccle miracle x
 

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