TTC with Endometriosis

• LAZB
• 4 years ago

• Wedding: May 2010

I’ll join you.  I have stage IV endo, and this is my first cycle TTC our second baby.  I just had our first son 12 weeks ago, but he sadly passed away when he was five weeks old.  Partially due to my endo, DH and I want to TTC again right away, so here I am.

The first time I TTC it took us one year to get pregnant.  After seven months I had a lap because I had a cyst that wouldn’t go away, and my doctor wanted to check it out.  She took a look around in there, and it turned out that I had horrible endometriosis.  I did always get horrible cramps and pretty heavy bleeding, but I was also very regular in my cycles, so I had no idea that I had endo. 

I also have a short luteal phase, so a few months after my lap, my doctor put me on Clomid, and BAM! Pregnant! 

I would like to avoid another lap if possible, so we are back on the baby making train.  My doctor said that if we try with no luck for three months she will put me back on Clomid, but I’m hoping that I won’t need it this time.

• dw1908
• 4 years ago

I’ve had terrible cramps since I started getting a cycle at 14. For the longest it was just called “normal cramps”. It continued to get worse and worse. At 18 I was diagnosed with PCOS and I was put on birth control. For 5 years I would start a birth control, be fine for a few months or so, with pain I could manage, and then the pain would return consistently worse each time leaving me hunched over in bed. Finally at 23, having tried almost every birthcontrol and tired of no help I switched doctors. The new Dr. reviewed my history and said she was 90% sure I had endometriosis. She did a lap a few weeks later and it was confirmed. She was able to burn some of it off but basically said it would come back if I didn’t take something.

Since other hormones didn’t work she put me on depo provera and said if that didn’t help the next option would be to take lupron, which she explained as sending me into a temporary menopause. I took depoprovera for over a year and a half. The whole time on it I was spotting consistently (tmi sorry). My doctor said that when people get off depo it could take up to 18 months to get pregnant if they are able to. This brings me to now, pain started to creep back, I was still spotting and I am engaged the most amazing man ever! After talking with my doctor we decided to just see how my body reacts Without Hormones since I’ve been on them for 6-7 years. She said the best thing for me would be to get pregnant soon so that my endometriosis doesn’t progress and make conceiving difficult but that it likely will not happen for a while. So now as of 2 months we are TTC, nothing yet but a lot of spotting and I’m not sure if I’ve ovulated. I’ll probably get some OPK soon but I’m not sure when to take them since I’m spotting so much. We will see. OP thanks for starting this, it’s nice not being alone. Best of luck ladies in your journeys! 

• dw1908
• 4 years ago

LAZB:  I have a friend with a similar journey to yours. She had a lap and was put on clomid and was pregnant almost Immediately. I may need to do more research on it because it seems to be the go-to now when ttc. 

• Aqualov
• 4 years ago

• Wedding: August 2013 - backyard in the woods

I’l  join you. Let’s make some kind of format for anyone new joining, like the charters or TTC 6+ months, 1+year groups, to keep it organized.

AGE: Me-32, DH-38

AGE at diagnosis, and how were you diagnosed: Diagnosed at 30 when my pain became so severe I couldn’t walk. My primary care doc, who had been ignoring my complaints for a decade finally referred me to a OBGYN who immediately suspected Endo. I had a lap to diagnose and remove Endo in Jan 2013. I shouldn’t have had it since I had been on hormonal BC for over a decade, but I did (yea!)

Stage of Endo: 1/2

Symptoms: Severe AF pain, severe bowel/bladder pain during and just before AF, general digestive issues and hypoglycemia, migraines, pain during intercourse sometimes, exhaustion. 

How long TTC: Going on 11 cycles TTC#1

Things you have found that helped: I used to spot from up to 3-4 days before AF and have huge amounts of clotting. I take low dose baby asprin once daily and I find it helps immensely. No more spotting and it’s decreased my AF pain dramatically.

I also ovulate regularly. I have read that clomid is bad for Endo as it’s a phytoestrogen- the Endo feeds off of it and it can make it worse. How was your experience with it LAZB:? I’m hesitant to take it since my Endo seems agressive. Femara doesn’t work the same way and is said to be fine for Endo, which is what I was thinking of taking if a doc suggests Clomid.

bearsreddy:  Though technically without a lap you can’t be diagnosed, I’d be confident if my scan showed that too. Sometimes you can also be confident in it if a scan shows organs that are pulled out of place, suggesting adhesions. Endo severity is detemined by a point system based on the size and palcement of lesions, adhesions and endometriomas. An endometriomia isn’t neccesarily Stage 4, but it’s often a sign a of more severe disase, Stage 3-4, as endometriomoas are by nature large and usually deep and therefore worth more points. Here’s two tables for example of how scoring works:

http://www.health.am/images/uploads-gyneco/21-1tab.php

http://www.health.am/images/uploads-gyneco/21-3.php

The recovery for a lap isn’t bad at all IMO. I was terrified for my first one, but it really wasn’t bad at all. The IV hurt worse than the surgery for me. I was up and around in a few days and fully better in a few weeks. I actually taught a biology field class in Costa Rica only a month afterwards! The only place I was really sore was where I had an adhesion attached to my abdominal wall that was removed, but that was more of a soreness, an ache, not acute pain. Maybe if you have a later stage where more is removed the recovery/pain may be worse.

I have another lap scheduled in about 2 weeks for pain relief/fertility. Since going of BC to TTC my pain has been getting worse every month. A few months ago I found a new specialist, this time one who specilzes in Endo, since I didn’t like my previous general specialist much. My new doc (whom I love) thinks that since my first lap was an ablation, the doctor left a good amount of Endo in me and it has reoccured since I stopped taking BC. I’ll be having the lap done robotically this time, with excision, not ablation, which is supposedly better at reducing reoccurence of Endo. The robot is much more precise and better at removing it.

Since I don’t have any physical obstructions my doc thinks my TTC issues are immune related- when your body tries to fight off the Endo it produces chemicals that can be toxic to sperm and interfere with implantation. The first 3-6 months after a lap have improved fertility because the body slows/stops production of these when the Endo is removed. Surgery is the only way to increase pregnancy chances for those of us with Endo as far as I know.

• TeeBee25
• 4 years ago

• Wedding: April 2014

bearsreddy:  I have endo, not sure what stage I’ve never been told. I’ll soon be TTC and I’m terrified that it won’t happen. So I want to follow this thread! I’m having thyroid issues right now that I need to get straightened out before TTC.

I got diagnosed at 19, but have had symptoms since I was 12. None of the doctor’s took me seriously. I’ve had 4 surgeries to excise it and one to remove my appendix, trying to get my pain under control. I also have Interstial Cystitis. Not sure which causes me more pain, but daily I’m at at least a 5 out of 10. Anybody TTC with both endo and IC?

• mrstea83
• 4 years ago

• Wedding: December 2012

I’ll join in! It feels so great to know you’re not alone, since IRL it can seem that way (even though endometriosis is more common than most people realize).

Age: I’m 20, DH is 31.

Age at diagnosis, and how were you diagnosed: I had just turned 20 at diagnosis and was diagnosed via laparoscopy. It took me 7 1/2-8 years for a physician to take my problems seriously instead of trying to diagnose me with random things to placate me. 

Stage of endo: 2/3, mild-moderate. 

Symptoms: Severe pain in lower back and pelvic region, severe pain during/after intercourse, heavy periods, constant black discharge, infertility.

How long TTC: 13 cycles from October 2011-November 2012. MC in November 2012, then we stopped TTC until November 2013. Began TTC again in November 2013, and began ‘charting’ in January 2014. TTC 6 months this time around, but only 4 months actually charting. 

I O around the same cycle day each month (using OPKs, getting +’s, and having a 3+ day increase in temp so I’m sure I’m actually O’ing) , so that’s not an issue with my fertility. I’ve done everything I know to do to help increase my fertility (supplements, exercise, drinking a ton of water, eating healthier), but nothing thus far has helped. I’m trying to remain positive but it’s getting harder each passing month with no BFP. We’ve decided that if we haven’t gotten a BFP by cycle 6 of charting, we’re going to take further measures with my gyno. I was diagnosed with PCOS in May of 2013, and then endo in August 2013. 

• LAZB
• 4 years ago

• Wedding: May 2010

bearsreddy:  I didn’t think the recovery was bad at all.  I took off of work for a few days, but only because I could and was planning on it beforehand, I didn’t really need to.  And I was ovulating, but my luteal phase (time between when you ovulate and when you get your period) was too short.  Putting me on Clomid helped me ovulate “stronger” and helped to lengthen my luteal phase.

Aqualov:  I hadn’t heard about Clomid being bad for endometriosis, but my experience with it so far was really good.  I didn’t have any crazy side effects, and got pregnant the first round.  I had also been on BCP since I was a teenager, and still have stage IV, so I guess my endo is pretty aggresive too.  I’ll definitely mention it to my OB/GYN before going back on it.

AGE: Me-30, DH-36

AGE at diagnosis, and how were you diagnosed: Diagnosed at 29 when I had an exploratory laproscopy.  After getting off of BCP for the first time in 13ish years I had my period/heavy spotting for 3.5 months straight, so my OB/GYN had me go in for an ultrasound.  In the ultrasound they found a cyst that I needed monitoring for.  My doctor wasn’t really worried about the cyst, but it wasn’t going away, and I wasn’t getting pregnant, so she wanted to do a lap.  I had the lap in January 2013, and got pregnant in May 2013.

Stage of Endo: 4

Symptoms: Severe AF pain, severe bowel/bladder pain during and just before AF, heavy bleeding with clots

How long TTC: First cycle TTC #2, tried for one year #1

Things you have found that helped: I don’t have many tips, but I will say that so far being pregnant was great for my endo.  I had no problems during my pregnancy, and my first post partum period was long (8 days), but pretty much cramp free.

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• poetryreader80
• 3 years ago

• Wedding: May 2010

AGE: 34

AGE at diagnosis, and how were you diagnosed: 33.  My endocrinologist took an educated guess due to painful periods that got lighter after I went off BC (I didn’t even know that was a symptom!)

Stage of Endo: He never diagnosed a stage, so I don’t know.

Symptoms:  Painful periods, but usually only a few hours of intense pain if I take a large dose of Aleve beforehand.  Doctor said lighter periods are also a sign.  Infertility.

How long TTC: 20 cycles intermittantly, spread over more than 2.5 years

Things you have found that helped: I had a lap a month ago and the first period afterward was extremely painful, which I didn’t expect, so I’m interested to see how the next one will be.

• nyckitten
• 3 years ago

• Wedding: May 2011

Interesting thread.  I’d like to join and follow even though my diagnosis of endometriosis is “presumed” rather than “confirmed” at this point. 

AGE: 34

AGE at diagnosis, and how were you diagnosed: 34.  I was diagnosed with “likely” endometriosis in the course of my fertility treatments.  My DH and I have been doing multiple rounds of IVF (you can read all about it on the 1+ thread) and had some chemical pregnancies.  My current doc checked for endometrial dysfunction and found that I have it (the two layers of my endometrium don’t grow in sync, which can prevent successful implantation).  One of the most common causes of this is endometriosis.  We ruled out other causes such as endometritis (infection) and structural issues, so now we’re just left with possible endometriosis.  Now that I’ve read more about the symptoms of endometriosis I’ve actually had many of them for years — bad menstrual cramps (especially when not on birth control), heavy periods with clots, bowel symptoms with the onset of my period, spotting before my periods.  

Stage of Endo: Don’t know. 

Symptoms: Main one is infertility.  The other symptoms I mentioned above I hadn’t really thought much of — I just thought they were normal!  Now I know that they are pretty classic for endometriosis. 

How long TTC: 2.5 years (we have severe male factor infertility too). 

Things you have found that helped: We tried a course of depot Lupron for three months prior to our last two embryo transfers (so one course of Lupron and the transfers one after another), but they didn’t work.  I hate Lupron (I’ve also been on it for many of my IVF cycles)…I get killer menopause symptoms.  I’m also scared about the effect of depot Lupron on bone density.  I’m about to start acupuncture because acupuncture and Traditional Chinese Medicine are supposed to sometimes be effective for symptoms of endometriosis.  I’m interested in reading more about what your docs say about surgery for fertility because my fertility doc (who I really trust) feels like surgery wouldn’t help me because even if we removed whatever implants I had, it wouldn’t fix the problem with my endometrium.   

• Gypsygal6
• 3 years ago

poetryreader80:  Hey, I found this while on a quest for what’s causing my light periods for the past few months. I’ve had very regular cycles as well as flow until we started TTC a few months ago. After two cycles of no results, my cycle shortned by a day and my periods also became much lighter – only 1.5 days of real flow and I noticed more clotting and dried blood than before. I’ve also been TTC for 6 months with no BFP. I do O regularly based on OPKs and BBT. My doctor dropped the ‘e’ word on me after a consult last month for some mild pelvic pain (which has now resolved for the most part). I was pretty shocked since I don’t seem to have any of the typical symptoms. Your post really made me stop and think since you mentioned your doctor’s opinion of light periods being a symptom as well. Could you please tell me more? Was your period pain increasing before surgery? Did you doctor say how much endo was there and why it might have resulted in lighter periods as opposed to the usual heavy periods? I’m looking for some answers as to why my periods changed and if it has anything to do with my lack of BFP. Thank you! Hope your next period is less painful and more normal! 

• Aqualov
• 3 years ago

• Wedding: August 2013 - backyard in the woods

I saw this thread pop up again and thought I’d update since my previous post is quite innaccurate now. I had a second laproscopy by my Endo specialist in April (my first one was before TTC in Jan 2013- diagnosed/removed Stage 1/2 Endo by previous doctor) to see if my Endo had returned and remove it, to decrease my pain and increase our TTC chances. Unfortunately since coming of BC to TTC last summer my Endo has gotten much worse- Stage 4. Almost anywhere it could be, it is, even in rare places that can compromise my health (kidney/both ureters/bladder).

The recovery from this lap was much worse than my first one, likely because the doctor removed so much Endo- I barely had any during my first lap. I was down for most of 2 weeks. The scars were much smaller and the incision pain was reduced with the robotic lap though.

My specialist excised as much Endo as he could, but I need another surgery to get it all. I started a 6 month course of Zoladex at the end of April, which will put me into fake menopause for to keep my Endo from getting too much worse while I heal from this surgery, and help reduce blood loss during my next surgery, which should be in October.

nyckitten:  My doctor thinks that surgery that removes all of my Endo will help us TTC because if he can remove the Endo he can reduce/eliminate the toxins that the body’s immune system produces to combat it. These toxins are secreted into the peritoneal fluid and can kill the egg and sperm before implantation can even occur. With my agressive Endo he thinks the first 6 months after full Endo removal are our best shot.

• Gypsygal6
• 3 years ago

Aqualov:  I’m so very sorry that you had to go through that. I’m glad they were able to get most of the endo out. Hope you see your precious little miracle soon and that this will all be so worth it in the end!