Update: Difficulty TTC - Possible Endometriosis

Parentberries
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[name]Hi[/name] Berries,

Thank you so much for all your kind words regarding my original Difficulty TTC thread, found here:

Here is an update on my situation. I did not mention in my original post that I have been having SEVERE abdominal pain with my period every other month or so since [name]December[/name] 2011. After 3 ultrasounds, an ER visit, and countless consults with OBGYN’s, (many of whom did not take me seriously,) it was decided that I probably have endometriosis. For those of you unfamiliar with the disease, (as I was a week ago,) it is a chronic condition where endometrial tissue, (the stuff that comes out in your period,) grows outside the uterus, onto other organs and in your abdominal cavity. It can be extremely painful, (as mine is,) and can even bind organs together. There is no “cure,” although treatments range from birth control, (obviously out when you’re TTC) to a hysterectomy.

The only way to diagnose endo is to do a minor exploratory surgery. My doctor says I need to build more of a ‘paper trail’ before we can justify this surgery, which I understand. Unfortunately, in the meantime, there is very little that can be done to control the pain - which many people liken to that of labor, or even worse. Mine was so bad this month, I was in bed for 3 days straight and ended up in the ER because I felt like I was dying.

[name]One[/name] major symptom of endo is infertility, and 30-40% of all infertility cases are caused by endo. This is obviously devastating for us, as we’ve been TTC about a year now with no luck. [name]Even[/name] though I don’t have an official diagnosis yet, I am convinced this is what is going on, based on several other symptoms I have coupled with the difficulty TTC.

I am looking into some natural treatment recommendations, such as diet change. The endo diet is extreme: no gluten, dairy, caffeine, soy, or sugar. Ha, yeah right. I am, however, seriously trying to cut out gluten and dairy and reduce caffeine and sugar, as a lot of people have said this drastically reduces their pain. Being a huge foodie, this has not been an easy task!

Thanks to all who took the time to read this. I guess I don’t really have much of a point, except that I’m just trying to digest all this new information without becoming overwhelmed and defeated.

I’d love to hear from anyone who has endo, or if you have a loved who deals with endo. I personally don’t know anyone else who has it, so this is all really new territory for me.

Thank you!

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I am so sorry to hear of your situation. My aunt also has endometriosis. She was diagnosed after going through an ectopic pregnancy and a miscarriage while trying to conceive her second child. Her case is so severe that her doctor told her she would have suffered massive internal bleeding if she had carried a pregnancy to full term. I’m unsure about chemical BC as a treatment; my aunt was told that her endo was caused by being on chemical BC most of her life.

No gluten, dairy, caffeine, soy, or sugar isn’t as difficult as it sounds. Once your body detoxes you might be surprised at how much better you will feel overall. Gluten forms a sludge in your intestines and blocks nutrient absorption, which is a major problem for a lot of people (typically unbeknownst to them). Dairy blocks iron absorption which is especially not good for women. To wean yourself off sugar, try replacing your processed sugars with raw honey, organic maple syrup, and fresh fruit. Those are the best sugars for your body and the most easily accessible. Here is a good article on why you shouldn’t eat soy:

http://articles.mercola.com/sites/articles/archive/2010/09/18/soy-can-damage-your-health.aspx

I think it is awesome you want to pursue a diet change. I am in the process of doing so myself. If you need the extra push, I definitely recommend exploring Dr. Mercola’s site.

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tintri,

That pain sounds very difficult to say the least, but try not to lose hope about conceiving. I know a good many people with endometriosis, w/different levels of severity, and pretty much all of them have had babies. Some have required some assistance (anything from a little additional hormonal support all the way up through IVF), but some have conceived naturally. Also, endometriosis can be to a certain extent removed through laparoscopic surgery (the same surgery used to diagnose the problem). I’ve had a laparoscopy (where they did remove tiny bit of endometriosis), and it wasn’t a big deal at all–I was put under but it was fairly quick and the recovery wasn’t bad. I conceived my daughter the next month (with some assistance). [name]Do[/name] you have a reputable reproductive endocrinologist in your area? I would definitely consult a specialist with experience and training in minimally invasive obstetric surgery. It sounds that if you’re in that much pain, and have been trying to conceive for a while, diagnostic/therapeutic surgery is certainly worth discussing with an expert.

I would also recommend the book “The Infertility Cure” by Randine [name]Lewis[/name]. It’s based on the principles of Traditional Chinese Medicine and gives a holistic perspective on different disorders as well as specific diet/herb/acupressure/acupuncture recommendations for specific conditions. If you can find an acupuncturist with training in obstetric issues and Chinese herbs, that would also be great.

Best of luck to you and again, don’t lose hope!

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Thanks for your kind words hilary! I [name]DO[/name] NOT have a good doctor to speak of. We just moved to a new town a few months ago, and so far no one is taking me seriously. The last guy I saw started giving me an anatomy lesson with the obligatory “your period can be painful at times.” I lost it on him, started crying and told him I was 27, had a master’s degree, was well versed in anatomy, and didn’t understand why no one was taking my pain seriously! He was more respectful and helpful after that… but I shouldn’t have to resort to that sort of behavior to get results!

I’ve been to ER, OBGYN, and GP. Also, I saw a different OBGYN and GP in the last town we lived in, and they pretty much blew me off too! According to testimonials from other women I’ve read online, this seems to be a common problem… Did you experience this?

I do have a lead on a female OB that has been highly recommended, so I’m eager to make an appointment with her if I can get one.

I’m so thrilled to hear about your success story regarding conception after lap! A lot of the experiences I’m reading say that most women with endo are able to conceive naturally or with drugs/IVF at some point, just that it might take a while.

Thanks again for your support!

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(FYI those who are squeamish might want to skip this).

[name]Hi[/name] tintri,

Sorry for the length, but I feel the need to respond properly to your thread. I have endometriosis and my symptoms started at 13. I am now 21 and am 6 weeks pregnant with my first child. I needed surgery to remove the endo (which was all throughout my abdomen) when I was 15 due to non stop heavy bleeding and unbelievable pain. After the surgery my doctor put me on the combined pill with a planned bleed every three months. I was always told I would need assistance in trying to conceive, so about 3 months ago I came off the pill with the intention of letting my periods regulate and trying to conceive (with help) early next year. Obviously, it didn’t work out that way :).

The main thing you need to know about endo is that the longer you leave it the worse it gets. With every cycle, your body floods with more hormones that feed the menstrual tissue (both inside and outside the uterus). I don’t want to worry you even more, but the sooner you find a decent gyno the better for your fertility. You might have endo around your tubes, which would explain why you haven’t yet conceived.

There is a test that an experienced gyno can due to see if you might have endo. It is by no means conclusive, but there is a ligament near the rectal cavity that endo commonly attaches to. When put under pressure it naturally shouldn’t hurt, but if there is endo present on that ligament it will. Of course, you might have endo and not have lesions on that ligament, so its just another indication really, not a positive test.

I wouldn’t worry too much about overhauling your diet if you don’t want to. A few years ago I was gluten free for 6 months, and found that it actually did help with the pain. I think this was more due to that being gluten free cuts out a lot of unhealthy foods from your diet. With now eating whatever I want, I find that if I eat heavily processed foods it really aggravates things.

With all this being said, you might not even have endo. You say you have extreme pain every other month, which could indicate a problem with one of your tubes (as you probably know most women ovulate alternately from each tube). If your ultrasounds haven’t shown anything though, I would bet on the endo. The lesions are actually really tiny for the amount of pain they cause. Other symptoms to watch out for are irregular bleeding, changes in bowel movements (especially during your period) and anemia.

I really urge you to find a better doctor. They shouldn’t make you wait while they build up a paper trail, an experienced doctor will be able to tentatively diagnose you and book you for surgery. I am really thankful my mother stood up to so many doctors who didn’t believe me and finally found a doctor in the city who was the head of the endometriosis research institute. He diagnosed me in 5 minutes flat and I had surgery a few weeks later. Here I am hammering home the point again, but time is seriously of the issue.

I really hope you are able to conceive soon and get that pain under control! Sorry again for the length and good luck!

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[name]Nahla[/name],

Thanks so much for your story and your support! I also feel that time is critical, and don’t like having to wait to “see what happens.” I work in a field where parents are always telling me their doctor told them to take the “wait and see” approach with their child - and usually it ends unfavorably for the patient.

Thanks for stating and restating the point that having a good doctor is key. I agree, and I do think I will keep looking around for a better doctor. It shouldn’t be so much work!

Best of luck to you in your pregnancy! I’m so happy to hear your good news! You will be in my thoughts!

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[name]Hi[/name] tintri,

I wanted to pass on a link that will help you to locate a reproductive endocrinologist in your area:

http://www.socrei.org/AffiliatedSocietyMemberSearch/

A good doctor would also be able to make an appropriate referral if your condition is outside the scope of his/her expertise.

All the best and keep us updated!

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Aw Tintri! I’m sorry to hear that you are feeling down and about the possible endo. I don’t have any personal experience (as you may remember from your other post … we are struggling with infertility as well … same age as you), but, I will agree with a previous poster that I have had a couple of friends with endo who have gotten pregnant (one of whom is actually due with her first baby in three weeks - conceived naturally!). My heart goes out to you and I hope you can find a RE who will take you seriously and knows what he/she is talking about!!! Best wishes and please let me know how you are doing!

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Thanks all! So far, the diet change is going really well. Trying some preventative meds this month (Ibuprofren) along with the new diet, and so far - no pain!

hilary - Thanks for the link!

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I don’t have any experience with endometriosis, so I can’t advise you on that, but I do know that ibuprofen is one medication you should avoid while TTC. Talk to your doctor about it, but what I know is that ibuprofen can interfere with ovulation and implantation. It’s also on the list of meds to avoid during pregnancy, because it has been linked to low amniotic fluid levels, in addition to certain birth defects in the first trimester.