Hi all! I was diagnosed with endometriosis in 2017 at 30. I had a 8cm cyst growing on my right ovary. The pain from this had been growing for months. At the time despite seeing numerous doctors not one suggested endo. This is despite me suffering from heavy periods, flooding and painful sex. It came to a head one day and I woke up in excruciating pain. Because it was on my right side it, they though it was my appendix and I was pushed through as an emergency and I was lucky enough to get an operation to drain the cyst. However, as they were not specialists this is all they did. They did however tell me that I was very stuck together. That my womb was not free and was stuck to the back wall. That one of my tubes was a bit mangled as was my ovary. Unfortunately, they also hit my bladder on the way out, resulting in me having to wear a catheter for 2 weeks to allow my bladder to heal. Finding out I had endo was a blow. At the time my husband and I had just started trying for a baby, having recently married 3 months before. 6 years on we have been trying with no success. My periods are regular and from ovulation tests I appear to be ovulating. Over the last couple of years my pain has been increasing steadily. I am in pain for more than half the month each cycle. Worse during my period. I am on naproxen and co-codamol to deal with the pain. I was on a waiting list to see an NHS consultant for 3 years who I finally saw in November last year. He advised that my egg count was low normal, that have cysts on both ovaries and that should he operate he would remove all the endo (great!) BUT this would substantially reduce my fertility. I was devastated. I had been waiting and hoping that surgery would INCREASE my fertility as well as help lessen my pain. From this appointment I have taken proactive steps to make myself healthier and less overweight. Losing 6 stone so far (a lot more to go!) through healthier eating and exercise. I was further encouraged following a Hysterosalpingogram which suggested that one of my tubes was clear, the other they were not sure about. But that my womb looked good. I am now also looking into alternative therapies like acupuncture for pain management and fertility. However, increasingly I am reading about how endometriosis, particular in the Pouch of Douglas can increase the risk of miscarriage? This terrifies me as I already have other health conditions that already increase this risk, my weight, age and under-active thyroid. I am 35, I am once again looking towards the surgery option, but privately through a private hospital in Belfast, to try to help with pain and my fertility.
I guess my questions are, to any other ladies particulary in Northern Ireland have you experienced similar? I have never been told what stage I am at with the disease, however being told that I am stuck down there may suggest stage 3 or 4? I am desperate to have a family. Has anyone been successful in doing so? Was this naturally or through IVF? Did further surgery help? Did you find alternative therapies also helped alongside this?
Thank you 🙂
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I just wanted to reach out to you to share my own fertility story. I only found out I had endo when undergoing investigations for infertility - until then I thought it was a possibility but never had the confirmation. I was diagnosed with stage IV endo and underwent a laparoscopy to remove as much of the endo as they could (which stretched down to my bowel). About six months after this procedure I underwent a cycle of IVF, which was successful and led to the birth of my son (now aged 13!). I also had acupuncture during the pregnancy.
After a couple of years we tried IVF again (a few times) but it was unsuccessful. I then had a cyst removed from my ovary and about six months later fell pregnant naturally with my daughter (now aged 7). I believe that both times surgery helped me to fall pregnant, but am aware that everyone is different.
Just out of interest, has your partner ever had any investigations into his fertility? Even though you have endo, the issue may not lie wholly with you and would be worth checking if you haven't already.
For your own needs, I would also recommend seeking out a qualified nutritional therapist who will be able to support you with weight-loss alongside your desire to start a family. You can find one on bant.org.uk - many will offer a free initial consultation, without pressure to book.
I know it sounds a bit 'woo-woo' but anything you can do to help yourself cope with stress is incredibly valuable, whether this is mindfulness, yoga, breathing exercises or something else. Stress has a lot to answer for, and anything you can do on a daily basis (even for just five minutes a day) to switch yourself from that 'fight or flight' mode into a more calm and relaxed state is really worthwhile.
Hi! Thankyou so much for your reply. Yes my husband also had tests done and his fertility is normal. May I ask if your surgery was ablation or excision? Thank you for sharing your story it gives me hope for the future!
Hi there, I’m sorry you are going through this. I found out I had endometriosis when I was 34, just around the time we started trying for a baby. It was on both ovaries and spread around. I had a lap but it all grew back within a year. We tried for theee years to get pregnant with no luck. Tried clomid and IVF and neither worked. In the end I did quite a radical change to my diet and lifestyle. I decided to do my best to reduce inflammation in my body. I have a long list of things I finally tried after the IVF failed, here it is below. I did all these things on the list for 4 solid months and I was pregnant for the first time ever at the end of the 4th month. I might have just been extremely lucky but in my gut I think reducing inflammation is what did it. Ok here’s my mega list.
- most important was the clear blue fertility monitor, I only used this for two months and it worked. Another two friends weirdly said the same so it’s def worth a go.
-No gluten, dairy, caffeine (other than one green tea a day), alcohol and barely any red meat for four months prior to getting pregnant. This is key I think.
- One session of hypnotherapy
- Did accunpunture every week or every other week from plus Chinese herbs (3 months)
- Took Dhea 75 mg a day
- Gardening!
-Chill time with family
- swam in sea once the week I got pregnant - I think this releases something.
- Met dr George at Zita West and for the first time felt in safe hands. Felt a huge weight lift after meeting him after nhs Ivf not working.
- had full immune testing including having my NK Cells tested which came back elevated. When I did final get pregnant I went on a low dose steroid for first 12 weeks to stop my body rejecting the fetus.
- Used Yes Baby
- Partner took ProSeed multi vits
- I did a TRE workshop (total release experience) removes trauma and stress from the body.
- had a spoonful of Maca in smoothies and porrdidge/cereal in morning.
- yoga, meditation and anything to lower cortisol
- magnesium drink every night. - natural calm is what it’s called just the original one
I don’t know which bits caused my body to finally kick into action but I’d say diet and acupuncture are key and my NK Cells being tested.
There’s a great book about healing endo with diet by Michael Vernon which I’ve read since having my son and a lot of what I did above is mentioned in there, so there definitely something to it. The diet and acunpunture is also really great for reducing endo flare ups.
Very best of luck, it’s a feckin nightmare trying to work out the puzzle. Give this a go as it worked for me and actually for two friends too.
Hi! Thank you so much for your response. Will give it all a go! Just placed a lot of it in my amazon basket to order. So glad to hear it worked for you!
hi kit_fergus, thank you for sharing your wonderful story. I have now had 2 failed ivf rounds and have stage 4 endo. I will look into trying the below. Can I ask what info you got from zita west clinician? Was it worth it ontop if everything else you did. And where did you order your Dhea from?
My issue is egg quality, AMH is 12-14 (can’t remember) and I produce a lot of eggs but all bad quality which I am convinced is due to my endo - despite the doctors beliefs! Need to throw everything else at it now. Just waiting for husbands dna fragmentation and plc-zeta results. We’ve been ttc 4 years, such a brutal journey ! X
Hey, glad it’s somewhat helpful! I just checked and I had asked my IVF doctor for a prescription which he ordered for me - at 25mg. Maybe ask the hospital you’ve been doing the ivf in for a prescription. My AMH was shocking - I think it was 4! So pretty much on the floor, when I did IvF (the ones that failed) I only managed 2-3 eggs each time. But as they say it only takes one egg so your AMH is ok and better than mine. I can’t recommend the acupuncture, anti inflammatory diet and NK cell testing enough. We were just about to advance with Zita west ( I choose them because of their attitude to immune testing) and had a few great meetings with Dr George there the month before we miracously got pregnant naturally. I really enjoyed talking to him and started acunputure there when I was in London. Maybe book in for a consultation and see what you think? They say online they won’t see you without booking the ivf but that wasn’t true and he did and I did tests with him without committing to a cycle. I really think it was calming down the inflammation plus really actively trying to reduce stress (which is hard as ttc with Endo is a flipping nightmare as you say). But you know what was bizarre and kind of amazing was that two other friends, 3 actually who I had been also ttc for years with endo and getting nowhere all got pregnant within a month of me and now all have toddlers. So I think believing in the future is key but please do try everything below and stick to it and see how you go. Sending you the very best of luck with it. Xx
Thats great news. I meant to say the reason I mention the fertility monitor is after years of using the pee sticks I was sure my ovulation day was the 11th of each month, when I used the monitor it revealed it was infact the 7th day of my cycle. So that had also been completely wrong info!
I use the clearblue monitor each month, you never release until you use it how often your ovulation day shifts. For me it is usually between the 11th and 14th of the month. The high fertility sometimes is only a couple of days too sometimes! 😯 Such a nifty thing to have!
great you’ve got it. I’d get onto the acupuncture and and anti inflammatory diet- there practitioners must be good ones in Belfast. I heard Sharon Campbell good. My family are from there!
Don’t give up! It took me over 5 years to conceive and I was on the route to IVF before we eventually fell naturally.
Before that I had an ectopic pregnancy which ended in a fallopian tube being removed as it had ruptured.
I was eating healthily, going to the gym and seeing an acupuncturist who was a fertility expert. So I was taking supplements and so was my husband- just know it can still happen.
I did have the surgery to remove some of the endo via laser, I believe this helped us to fall pregnant as well. Don’t give up hope and don’t pile pressure in yourself.
Thank you for sharing. Sorry to hear about your ectopic pregnancy but so glad to hear that you fell pregnant naturally after surgery. Fingers crossed that surgery and a healthy lifestyle will help us too.
I am in early diagnosis stages, as they thought I had a cancerous mass on one of my endometriomas. I get it when you say it is a blow to learn you have it. I don't think many understand. I looked into supplements to take and I take loads. But specific ones are DIM, Sulphoraphane and Calcium D Glucarate. These block, and clear the less desirable estrogens which I read contribute to endometriosis and other gyne issues. They are aromatase inhibitors, and with bio-identical progesterone, can be a big help to deal with endo. I read they can even shrink ovarian cysts. My own cysts went from 9cm to 6.5cm so maybe my estrogen "diet" and these supps helped.
However, with a years hiatus from all supps due to stressful move, I went downhill.
I am willing to give it my all now and try and get some semblance of life back, without hysterectomy (I have impaired ovarian function and ooperectomy would only make these symptoms much worse, my hypothyroidism included)
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Please help with fertility question
Just diagnosed...
Had first op just over 2 weeks ago....been diagnosed with endo... Is it normal to experience the stuff below after the op and mirena coil?
What stage is my end?
