IVF / Endometriosis - help/ advice needed

poshnosh

I am quite new on here and hope I'm posting in the right section.......

I am 30 yrs old, had my 1st IVF treatment on NHS in June '07 after 5 years of trying which turned out to be unsuccessful. After the egg recovery stage I experienced severe headaches, nausea and pain in my right hand side pelvic. I then had something to eat and threw up a short while later. I could'nt even walk properly. It was really bad. There were 3 of us that day who went in for egg recovery and I was the first in. The other 2 had their egg recovery, had some rest and walked off fine. I felt drained and sick all the time. The nurses said it was all normal........

In september I went to visit some friends (150 miles from home). I woke up in the middle of the night with severe pain in my right side ovary. Had very bad headaches and threw up. It was so painful hubby had to take me to local A&E. Again I could not walk and was wheelchaired inside the hospital. The doctors first thought it was my appendix but after telling them about IVF treatment they said it was most likely related to a) my ovaries, b) my fallopian tubes. As it was the weekend they said they were unable to do any tests. I was put on a drip and dr. wanted to see how my body reacted to having no food. He then ruled out appendix. After two nights stay in hospital I was discharged and told to go to see the doctors where I had my IVF done. I must state that during the first night in hospital I started my period after having a bowel movement.

Came home and got in touch with the nurses in IVF clinic who said it was nothing to do with my ovaries/ fallopian tubes and because my IVF was done "so long ago" (only 3 months ago) they dont believe this pain was anything related to egg recovery etc etc. Basically, they did not want to know and were really nasty about it. I asked them to scan me just to make sure everything was ok, but they were'nt interested.:mad:

I then spoke to my GP who also tried to get the IVF team to look at me, but he got the same answers as I. He then referred me to another hospital who scanned me (within a week)and said I have a condition of endometriosis - they can see a cist (about 4mm) in right side ovary.....and not to worry as these cists just disappear by themselves.....I usually have very bad period pains (since i was 14) and have to miss time off work as I am bedridden for a whole day. I dont like anyone talking to me and just want to be left alone until the pain disappears. Painkillers work for about 1/2 an hour!

On Friday night I woke up with that same pain on the right side and after an hour I went to the loo and straight after I vomitted......the pain went and my monthly cycle began.

Now I am convinced something went wrong during the egg recovery process. Maybe my fallopian tube is damaged....I really don't know. I feel so depressed and emotional because I don't know what's going on down there. I still want to have children but feel that no-one really wants to help. We went to see the dr. at the hospital last week (the one who put the embro's back in) and she denies this is anything to do with IVF.

If there are any nurses, gaeynacolgists or even anyone else who has had these symptoms or experienced endometriosis, please advise on what to do. Any tips, ideas will be much appreciated.

misspointy

hiya

Firstly Im so sorry that you are going through this. With regards to IVF...I have no idea but I have had severe endometriosis.
I had a 8cm cyst on my left ovary..which cause lots of pain, especially around ovulation time, and also I felt a deep ache in that area on and off throught my cycle.
I think you should keep yourself a diary of your cycle including pains, for a couple of months and then take it back to the doctor.
A lot of people find it hard to conceive if they have endometriosis...but do go on to have babies with the right treatment.
I also had bladder and bowel problems...due to endometriosis and ended up in surgery a couple of years ago having my ovary,tube and cyst out. Also had more endo removed from other pelvic places. It is very painful and I have collapsed from pain before.
See your doctor again...dont leave it to get worse. x

quietheart

Was your IVF from an NHS hospital. I'm surprised they are being so unhelpful. I think you need to be referred to see an NHS gynaecologist and undergo the normal investigations for pelvic pain. I'm not sure of the medical term but I had a 'fill and spill' xray where they inject die through your uterus and you can see the dye hopefully spill through the fallopian tubes therefore showing there is no blockage or problem. That could reassure you.
I had IVF and had lots of pain after egg collection, the op wasn't straight forward and they had to go through the uterus to get to my ovary which was behind it (not where it should be....) i had pain afterwards as well but wasn't ever sick. Can if you know why you needed ivf in the first place. The egg collection can't have caused endometriosis it could be co-incidence that your condition has worsened.
Don't give up hope, infertility is a horrible experience and people can't begin to understand how upsetting it is. Having these additional problems is going to increase your stress load and that won't help either. I know I made my pain worse by being so stressed about it.
When the time is right have a look at www.marilynglenville.com i conceived naturally following her programme, i've also got an ivf baby - i never believed it would work out but it often does. Take care and stay positive.
ps I had ovarian cysts and they did go by themselves

poshnosh

Thank you to both of you for your support.

Yes, the treatment was on the NHS. i know egg collection did not cause endometriosis but I strongly believe they've done something to worsen it because I have never in my life experienced this before until they did the IVF. I have completely lost trust in the NHS. Even when the embryo's were put back in - I was in so much pain I started to cry because the doctor could not find my womb (I have a retro vert womb which lies on the right side further back). It was awful as he was prodding me - totally undignified. After half an hour of this, they had to call another "experienced" doctor who put embyo's back in after 15 mins. On top of all this I had a full bladder which I was having difficulty with, but managed to hold it.

I have been keeping diaries of my monthly cycles for about 3 years now. On Fri I will see the GP and get him to send me for the fallopian tubes scan/test. Seeing the gynaecologist is a good idea too. I will get him to refer me to one.......
I know I have to stay positive but sometimes its really hard. Bless dear hubby - he has been extremely supportive and understanding. I know we're in this together, but coming from an asian background, not many asian men are understanding.

Anyway, thank you both for the advice and support

mr_rush

You can get a second opinion regarding this. Ask the gynaecologist to send you to someone else for it.

quietheart

I also have retroverted uterus and had trouble with egg collection, the full bladder was a huge problem....
Infertility is a hugely emotive issue, people don't understand how it can take over your life. I was incredibly down about it and found it hard to find the impetus or point to getting myself ready and getting myself into work. It's the feeling of having no control that I found very difficult. Trying to take control of the problems and start to do something about them may help how you feel. So do try and get a referral and get the tests done so you know where you are and where to go from there. I found changing my diet and taking supplements helped me emotionally as I felt like I was improving my chances and there were little things I could do without medical intervention.
I also found all the tests and procedures humiliating but the more I had (and i had everything going....) the easier it got. When it came to finally having a baby I think I'd lost all inhibitions due to the amount of exposure I'd previously had....
It's great the your husband is supportive, if you've got that you will go a long way. Best of luck and keep asking if you have any questions.