Endometriosis

Missy1 · Post by **Missy1** » Tue Jun 17, 2003 3:32 pm

Hi Ladies, Congratulations to you all. Hope you don't mind me asking this question but is there anyone out there with endometriosis who got pregnant with IVF? If there is, can you tell me which drug protocol you used? Wishing everyone a happy & healthy nine months. Thanks.

SallyP · Post by **SallyP** » Tue Jun 17, 2003 3:44 pm

Hi Missy, Yes I did! I severe endometriosis (diagnosed in 2000), and had a laparoscopy just before this IVF/ICSI cycle to remove 2 enormous ovarian cysts, then went straight onto buserelin sprays for abotut 3 or 4 weeks until the cycle was scheduled to start ( this was an NHS cycle). this was my second attempt at IVF/ICSI, the first was in November and unsuccessful, and at the time did have small ovarian chocolate cysts present (had had surgery in the July but they had grown back!). So this time, I had the laparoscopy, then buserelin, then 5 amps Menogon per day for 11 days and then the Pregnyl. Had 6 eggs, 5 fertilised and 2 got to the 4 cell stage, the others stayed at 2 cell so died. Am now 6 weeks 5 days and due for a scan on 24th July. Do you have endo? Are you pg?

Missy1 · Post by **Missy1** » Tue Jun 17, 2003 8:18 pm

Hi Sally, Thanks for your reply. I'm not pregnant (yet!) but I have just been dx with endo. I am 37. I had a laparoscopy in Nov 2002, no endo found!! Then did 1 cycle IUI, then a cycle IVF, both failed. My left tube was found to be swollen and dilated so I had that removed at a second laparoscopy a couple of weeks ago when my Dr found endo adhesions, also pathology found endo in my left tube. Before my next cycle, my Dr wants me to take Lupron Depot for 3 months beforehand but to be honest I'm scared of the side effects and was wondering what drug protocols had worked for other endo people. Thanks again for your reply and good luck for your scan in July - are you expecting twins or a singleton?

SallyP · Post by **SallyP** » Wed Jun 18, 2003 9:28 am

missy, I'm 36 and was diagnosed in 2000. My first consultant (gynaecologist who found the endo) advised me to take 3 months of Zoladex before going on any IVF cycle. This acts in the same way as Lupron - ie downregulates you so your endometriosis stops, and may even shrink (but will not make it disappear or cure it more's the pity!). Then, when I actually saw the consultant for the IVF, he is also a specialist in endo, and said that in my case, the endo was so severe that Zoladex would not have much of an effect, that I would be better having the endo removed surgically as much as possible (laparoscopy and vaginal drainage in the same procedure) and then to start the cycle immediately . When my endo was first diagnosed 3 yrs ago, I had zoladex for 6 months to try and calm it down, and although it was great being pain free, after about 4 weeks you are hit by enormous menopause symptoms (terrible hot flushes, night sweats, no libido, moodiness). When I went through the IVF, I had it in Liverpool and I found it very reassuring to have a fertility doctor who knew a lot about endometriosis, so if you can, try to find someone who is an expert in both areas, as you want the endo to be controlled, but without compromising your fertility. Good luck! Will know on Tuesday re scan, really hope it's one as I couldn't cope with 2!!!!

KirstyC · Post by **KirstyC** » Thu Jun 19, 2003 8:02 am

Hi Missy, I am 20 weeks pregnant after ICSI treatment. have severe endo (diagnosed 8 yrs ago) I have had lots and lots of drugs over the years. for both endo and infertility. I was put on clomid for a while which is really bad for endo..so try not to use this for too long if possible (It speeds endo up) I have ended up having four laps to drain cysts and laser adhesions and eventually had a laparotamy sept 11 th 2001 (great date huh?) To remove a huge cyst which was out of control and couldn't be treated with zoladex or anything!! While they were there they gave me ovarian drilling (which helps pcos which I also have). Anyway to cut a very long story short I have been given so many treatments over the years that I have forgotton all the names! some better for endo than others...the best advice I can give you try and gain all the information you can on the effects to your endo to any drugs given and remain hopeful and never give up. Best of luck with everything Lots of love kirsty xx

SallyP · Post by **SallyP** » Thu Jun 19, 2003 9:28 am

Oooo - just remembered, when I first met my lovely endo/ivf consultant he told me to take omega 3 and omega 6 fatty acids (evening primrose oil and fish liver oil) every day as there was a lot of evidence to suggest that these fatty acids can reduce pain and inflammation in endo. Although my cysts came back, the endo had improved generally, and I had hardly any pain through my cycle - until I started taking the supplements I would get pain from mid cycle to day 3 of my period, but with the supplements only got pain the day before and the day of my period. I also had acupuncture and chinese herbs before the cycle so that helped lots with the pain too. Kirsty - I have heard that endo adhesions can stretch painfully in pregnancy - have you had any experience of this - I am only 7 weeks! Love Sally x

KirstyC · Post by **KirstyC** » Thu Jun 19, 2003 12:18 pm

Missy- i have just remembered (sorry going scatty too...must be the pregancy fog!) That I used nutrition to help with infertility..I went to see a lady called dian shepperton mills who is a specialist in treating endo (how could I have forgotton this earlier???!!) She advised me to cease eating wheat products for the endo and diary for the pcos...you should definitly consider looking into this area as I am conviced it helped get me pregnant.....she also advised me to take various supplements including effamarine (which I think is evening primrose and fish oils) Sally, I am getting 'twinges' where my uterous is stretching but it's not painful.(yet).. how are you feeling?I felt really tired when I was 7 weeks... Best of luck with your scan.. lots of love Kirsty x

Missy1 · Post by **Missy1** » Thu Jun 19, 2003 3:31 pm

Thanks ladies for your advice. I have decided not to do Lupron Depot for this cycle, I just let my RE's office know so I'm waiting to find an alternative protocol. I don't think my endo is extensive (on the first lap they didn't find it!!)so wish me luck!! Good luck to you both with your pregnancies.

SallyP · Post by **SallyP** » Thu Jun 19, 2003 4:13 pm

Kirsty - good news re the 'just twinges but no pain' - at least your're halfway through! How are you feeling? What horrors do I have to look forward to !!!??!! I feel generally fine thanks - slightly sore boobs, no tiredness at all and slight background nausea, which is helped enormously by acupressure travel sickness bands on the wrists. Missy - if your endo isn't extensive then they may just want everything to calm down 'inside' after your surgery until you start your cycle - after my lap I just took the buserelin spray until the cycle started about 2 - 3 weeks later, which made a lot of sense as the clinic I was at used buserelin to down-regulate everyone before the injections anyway, so I was just downregulated for longer to give my ovaries a bit of breathing space (poor things!). Keep your chin up and let us know how you get on. Best of luck, Sally x

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