12 replies to this topic

[Polaris]

Hi I am new to this site.
Anyone with stage 4 endo. My first ivf cycle was just cancelled. Dr's
suggest we maybe try again but have a less than 5% rate of success.
Any advice?

Polaris

[Hope]

Hi

I have endo too. Sorry to hear of your poor prognosis

Have you had a laparoscopy recently to get rid of as much endo as possible? Have you seen a naturopathic doctor to help you with acupuncture and/or supplements to help supress the endo? Have you eliminated caffeine? Did your fertility clinic specialist do any tests? Do you have any damage that can be fixed? What were the reasons your IVF was cancelled - anything that can be approached and dealt with/prepared for next time?

I only ask these personal questions to give you food for thought, you do not have to tell me the answers

My advice to you:

first, see the psychologist at your fertility clinic - this had a profound effect on me, truly helpful in many ways
second, see a naturopathic doctor to help you be as proactive as you can in regards to your endo and fertility (not only with acupuncture and supplements, but also diet)
third, see a gynecologist/endo specialist (whomever) to attack your endo with whatever possible, to provide your body with the best opportunity for future fertility procedures
fourth, read - get books on your issues - endo, infertility, etc...

Some books I have found helpful: "The Infertility Survival Guide" by Judith C. Daniluk, "The Infertility Cure" by Randine Lewis, "Fertility for Dummies" by Jackie Meyers-Thompson & Sharon Perkins.

The book The Infertility Cure has by far been the best . My naturopathic doctor lent me her copy, and it was so profound I bought a copy myself. It has tips for diet and lifestyle and herbs etc... It requires an openness to new ways of thinking, but is so helpful and incredible - I recommend it to everyone. It has a special chapter on Endo that is especially helpful. It can only help


Good luck, take care of yourself (emotionally, spiritually, mentally and physically), and keep in touch

[hopeful123]

hi polaris
welcome to the board ,the mental peace you will find here regarding your infertility is best to none in the world

i have endo too,but dr never mentioned the grading
all i know is that i had microscopic endo in my posterior culde sac (behind the uterus),my left ovary was partially resected (and now its a poor responder ..only one egg retrieved at ivf cycle )
left tuboplasty done ...thus i am at a higher risk of ectopic ..so chose ivf
both my ovaries were stuck to uterus and were freed during the surgery(laproscopy)

so what your dr has told you?is there a hope to save your ovaries ?

good luck and lots of baby dust
sam

[Meredith]

Hi I am new to this site.
Anyone with stage 4 endo. My first ivf cycle was just cancelled. Dr's
suggest we maybe try again but have a less than 5% rate of success.
Any advice?

Polaris

Hi Polaris,

First, welcome to the site. I have been a member for a week now and really love it. The info and support is wonderful!

Have you had surgery as of yet?

My girlfriend had very bad endo and had surgery. She ended up trying IUI twice and failed...and then they thought about IVF. They went away on a holiday to Europe for a couple weeks and decided when they got back they would register with the program and begin the process.

As it turns out, they ended up getting pregnant on their holiday! They had a very little chance as well. They now have a beautiful healthy baby girl.

I would definitely try again with the IVF. For my hubby and I..if we would have never decided to do it...would have always wondered "what if". We both wanted to try everything before deciding no, but you need to do what is best for the both of you!

I wish you lots of luck!
Meredith

[WannaBe1]

Hello, Polaris...

I'm so sorry to hear about your endometriosis. It is an enigmatic disease that is truly difficult to deal with. I, also have had stage four endo, four laproscopies, and a plethora of other treatments that have been recommended. You name it, I've tried it with full force.

Some of the things that I have tried that have helped are:
acupunture (my first doctor, anyway), hot baths seem to ease horrible pain bouts, aromatherapy helped me fall asleep (clary sage and lavendar, but they are not recommended if you are pregnant), diet, diet, diet!!!
I have been on a restricted diet for about 3 years, but have been trying different diet approaches for almost 8 years. I also made a trip to an environmental allergist. Most women who have endometriosis also have an allergy to candida. This can effect you in many ways. I felt relief between periods eating an anti-candida diet. It's not easy, but it pays off. Exercise can help, but I opt for low impact, meditative exercises like yoga and pilates. Sometimes high impacts can make you hurt. Also, when doing yoga, be sure to discuss your condition with the yogi/yogini. Some twisting postures may not be good for you.

The main thing that has kept me going is being proactive. The problem with endometriosis is that too many regular gynecologists THINK they know what they're doing with a laproscope, but from personal experience, I can attest that this is NOT so. I know that you may be in Canada, so I suggest visiting the various endometriosis associations and talking to other women regarding surgeons. You can tell the difference between a skilled doctor who exclusively treats endo and their methods. I had a great experience with Dr. Tom Lyons in Atlanta, GA. I had to travel to get there and stay one week, but it was well worth the money and time.

Another thing to consider is that just because a doctor (even a specialist like Dr. Lyons) suggest hormonal therapy does not mean that you must do it. YOU are in charge of your body and your treatment. YOU know how your body reacts to different meds. You have the right to find your own method of treatment using other's knowledge as a springboard.

The frustrating thing about endo is that you must do the legwork to find treatments. Most General Practitioners DO NOT know the first thing about it. Be selective.

Also, do not exclude the natural alternatives. They can be very effective. I had much luck (before IVF) using natural, plant based compounded progesterone capsules. They helped with the in between periods time. In fact, it could have been a fluke, but when I stopped the pills to begin IVF in December (month interim between this time and when I began Lupron supression), but mid-January, I was unable to work because of the constant pain I was in. (Dr. wanted to perform another surgery, but my husband and I had done the surgery route a year earlier in hopes to begin pregnancy).

Every case is different, but all women with endo can relate to the emotional strain that it causes on you. I've lost friends and almost jobs because of it. There are many resources available. I'll dig up some of mine and relay them to you.

Are your ovaries and tubes ok?

Let me know if you need anything at all.
Alexis
PS One HUGE mistake I made is that I substituted all meat and animal products with soy products. Soy products are good as in tofu, tempeh and miso (in moderation), but other products can do more harm than good because they are so highly processed. Soy actually has a high estrogen content which can make your symptoms worse, as endo is an estrogen sensitive disease. Just be careful. THe diet I follow is online. You can google it: The Endo Diet. It was developed by a woman in the UK. Let me know if you cannot find it. I'll see if I can dig up the site.

[Ladyluck]

Hi Polaris,

Maybe you should explore different treatment options.

I too have stage 4 endometriosis and blocked tubes. I had a laparoscopy to remove a large endometrioma on my left ovary but they were unable to remove any of the endometriosis. I actually started an IVF cycle but then cancelled it because I did not feel ready both physically and emotionally. I never suspected that I had endo until my operation because I never had any pain that seemed out of the ordinary. I just thought that the cramps, brutal PMS, heavy bleeding were just "bad periods".

Shortly after cancelling my cycle, I decided to start seeing a naturopath who diagnosed me with candidiasis and put me on a special diet. I am also getting acupuncture and taking herbal remedies to support my endocrine system. About 4 months into the treatment I started to see definite improvements in my period and overall health. 11 months later my periods are quite normal and I no longer experience the baggage associated with it. Sometimes, when I forget to check my calendar, I even forget that AF is coming because I feel completely normal. Also, my last two ultrasounds have been "satisfactory". The treatment wasn't easy but I would do it again in a heartbeat...it improved my life immensely!

Good luck to you!

[Lola99]

Hi I am new to this site.
Anyone with stage 4 endo. My first ivf cycle was just cancelled. Dr's
suggest we maybe try again but have a less than 5% rate of success.
Any advice?

Polaris

Welcome to the site. I am not sure about what stage endo I have but, was not given a success rate. The dr said that you try it and may or may not work. They know so little about endo as well...I am suprised that they gave you a <5% success rate. Good Luck!!!!

[ejay]

I have stage 4 endo and Mt Sinai told me that within three IVF/ICSI cycles that I had about an 80% chance of conceiving and having a baby. So, I'm not sure how they would give you such a low rate. I'm now waiting to see Dr Virro at Markham Fertility in November, to get the ball rolling towards beginning our first IVF.
Just wondering maybe that is without having had at least 1 lap to clean up your pelvis? Check out my siggy..shows how bad my endo was, and my prognosis is so much higher? I'd be asking about that!

[jenloveslife]

Welcome to this site!! I also have stage 4 endo and had 2 lapros and one clamped tube( for hydrosalpinx) and afterwards was given a 50-60% chance of ivf working for me. I wonder why they gave u such a low success rate. Myself as well as everyone else here is wondering if u have had any lap surgeries to clean up the endo. I know they give a poor prognosis before surgery as the endo causes so much inflammation that it can impede a pregnancy. Let us all know!! Dont give up hope..sometimes its the only thing that keeps us going!!

[lilly]

Hi ladies - I just noticed that her post was from 2006 - so maybe she's moved on?

I have stage 3-4 and am about to begin Lupron - but am pretty worried about the side effects.
Lilly

[amanda-moo]

I was on the lupron monthly injection after my first lap surgery. Chose to take it for 2 months and couldn't go for the 3rd. I found the side effects were too much and didnt address any of my pain. In fact I found I was in more pain than not having any treatments.

For my FET cycle my RE wanted me on daily lurpon shots for 3 weeks. At first I thought it was going to be similar to my experience a few years ago but it wasn't. The daily injection had no side effects for me

Lily, hope your lupron journey goes well. Its different for everyone

[Nantol]

Hi Lilly I'm currently taking Lupron (1st shot) taken earlier this month. My RE said I won't really notice any difference for the first month and may still get my period ( so far I haven't noticed any changes no hot flashes or mood swings). I am trying to be more conscious with what I eat (eating lots of calcium rich foods - kale, arugula, salmon, oatmeal etc...) so hopefully that might help with symptoms ? Pm me a month from now and ask how am doing at that point lol.

[Nantol]

I was on the lupron monthly injection after my first lap surgery. Chose to take it for 2 months and couldn't go for the 3rd. I found the side effects were too much and didnt address any of my pain. In fact I found I was in more pain than not having any treatments.

For my FET cycle my RE wanted me on daily lurpon shots for 3 weeks. At first I thought it was going to be similar to my experience a few years ago but it wasn't. The daily injection had no side effects for me

Amanda - congrats on bEing PUPO!