This is my first post on BubHub. I wrote it in case my experience can help people who are TTC.
(WARNING – LONG POST!!)
I have just been diagnosed with Stage 4 (Severe) endometriosis.
I only found out I had it because we sought help from a fertility specialist after TTC for more than a year with no BPFs. I’m 34 and have a regular 28-29 day cycle with confirmed ovulation each month. Like many women, I experience a bit of cramping on Day 1 of my period, but it’s not particularly painful and was considered by doctors to be normal. I had been experiencing some minor bowel issues for some time (my daily BM often on the softer side – sorry if TMI!), at random times of the month. Initially I had put this down to stress, due to a highly stressful job, but it continued once I had finished that job and no changes in diet (gluten free, dairy free etc.) seemed to help. It was put down to mild IBS.
After extensive testing over the course of the last few years – countless blood tests, a stool test, 4 x internal ultrasounds, an HSG test, AMH / egg count – that all came back normal, our options were to consider either having a laparoscopy to look for abnormalities/endometriosis or to try IUI or IVF for a few cycles and if that wasn’t successful, then have a laparoscopy to see if there were any issues.
Coincidentally around the same time I was talking with my cousin about TTC as she had experienced issues conceiving (though now has a baby girl), and she told me she had severe endometriosis, and so did all our three aunties on dad’s side of the family. No one in the family had ever mentioned it to me before, probably because it’s not something that people talk about much. I had also been going to an CM/acupuncturist who specialises in fertility, and around the same time, she mentioned that from her observations she thought I could have mild endo. Both of these discussions had planted a seed in my mind that endo could be a possiblity for me. It’s often hereditary – they have found that if someone in your family has it, you are 7-8 times more likely to have it. So I did a lot of research on it before my next FS appointment.
My FS said that if I chose to have a laparoscopy, she would operate and if she found endo she would remove it. I said “but what if it’s quite severe” and she said that if it was too extensive for her, she would stop the operation and refer me on to an highly experienced endo surgeon. I told her that I only wanted to go through surgery once, so as a precaution, I’d rather have an experienced endo surgeon do my laparoscopy, even if it turned out that I didn’t have it or only had it mildly.
So, off I went to one of the leading advanced endo excision surgeons in Brisbane. He did an ultrasound and within about 4 seconds of inserting the probe, he just said, “well, I can tell you that you definitely have endo, and it’s severe”. I was really surprised and said “how can you diagnose it so quickly via ultrasound when 4 others couldn’t see anything?”. He said that he sees these kind of cases every day and he knows what he’s looking for - he can tell by the way organs move around (or in the case of severe endo, don’t move around!), if there are masses of adhesions/nodules, and if there are endometriomas (endometrial cysts) on the ovaries, which in my case he didn’t see luckily.
He said I was lucky that given the severity of my endo, I didn’t have extreme pain. The funny thing with endo is, that a percentage of people with quite severe endo don’t have serious pain. It’s only picked up when they start investigating fertility issues. I’m now booked in for excision surgery next month.
So, if you’re in a similar position to me with unexplained infertility, I really encourage you to read up on endometriosis. Even if you don’t have painful periods, if one or more of the other symptoms ring a bell, or there’s a history of it in your family, consider that it could be a possibility for you and seek a consult with an experienced endo specialist. Even if you don’t have obvious symptoms at present, if you remember symptoms occurring in the past, even as far back as your teens, then it’s worth considering. Endo often starts growing at the onset of puberty thanks to the increased oestrogen and the pill can help to reduce symptoms so it may have been a while since you've had any.
Many women with endo can get pregnant no problem, and some just take a little longer to conceive. But if it’s severe (Stage 3 or 4), then the likelihood of getting pregnant is significantly reduced, even with IUI or IVF. This is due to issues with the anatomical structure of organs (due to being fused together!), and the chemicals/toxins released as a result of the inflammation created by endometriosis which is believed to be detrimental to the survival of eggs, sperm or embryos.
The best option is often laparoscopic excision surgery performed by an expert endometriosis surgeon. After minimally invasive surgery, they have found that the chance of pregnancy increases quite a lot for those with severe endo. My surgeon has had many patients fall pregnant naturally soon after surgery, in fact he supports trying naturally for a while post-surgery when there are no other factors impacting fertility. The chances of successful IUI or IVF post-surgery also increases quite a bit, taking into account age of course.
From my experience, I’m so glad I pushed to see an expert surgeon straight up, even though I didn’t have severe symptoms. At my age (now 34) I wouldn’t have spent so long TTC naturally, or spent a lot of $ on acupuncture before seeing a specialist if I’d suspected endo (acupuncture can be helpful in reducing endo symptoms though).
So, for those of you who are interested, I have listed some of the symptoms of endometriosis (taken from the Endometriosis Care Centre of Australia website) below.
In my case I only had a few - seemingly unrelated - symptoms: non-cyclical mild bowel changes, some pain with periods (not considered severe, though have memories of quite severe pain as a teenager), fatigue (which I put down to weather, stress etc.), an incidence of back/sciatic nerve pain, PMS bloating, a little hard to budge weight gain around the tummy and cyclical acne. Many of these surfaced after coming off the pill (which I now know tends to help reduce endo symptoms). My GPs had never mentioned endo to me, there’s just not a lot of awareness out there, and given I didn’t have severe symptoms, it was probably something they didn’t think was likely.
- Changes in bowel, bladder, sexual or menstrual function of a cyclical nature.
- Changes in menstrual pain: increasing severity or duration of pain, pain not responding to drugs such as Ponstan or Naprogesic, pain which interferes with normal daily activities or employment.
- Bowel symptoms of pain, constipation or diarrhoea at time of the period. Sometimes blood or mucous may be passed from the rectum.
- Frequency and pain when passing urine, pain when the bladder is full in the morning. Sometimes blood may be passed in the urine.
- Menstrual changes including heavy bleeding, prolonged or shortened periods or periods which stop and start.
- Spotting before the period
- Premenstrual syndrome including heavy bleeding, prolonged or shortened periods or periods which stop and start.
- Tiredness, depression
- Pelvic pain
- Low back pain
- Ovulation pain
- Pain with sex, felt deep in the pelvis which is worse before and during the period and may alter with change of position.
- A similar pain may be felt during pelvic examination when the doctor places pressure behind the uterus.
Some other good and accurate resources (beware there's a lot of myths and incorrect info out there!) I’ve found are:
- A great article that summarises the condition: http://www.theguardian.com/society/2...millions-women
- ECCA - Australian body with trustworthy info on the disease, symptoms, good practitioners: http://www.ecca.com.au
- Endometriosis Australia: http://www.endometriosisaustralia.org
- EndoActive: Australian organization promoting awareness of endometriosis: http://endoactive.org.au
- One of Australia's leading endo surgeons in Sydney, Professor Michael Cooper has an informative blog and other resources on his website: http://www.mjwcooper.com.au/index.php/blog.html
- Endopaedia - a great site with some of the latest information and research on the disease, run by an expert endo surgeon (Dr Redwine - yes that's his real name!) in the US: http://endopaedia.info
I’d love to hear from others who have been in a similar position to me. What was your experience?
Wishing you all the best in your journey!