Fertility Network UK
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Hi everyone, I’m posting here looking for some advice. Well my husband and I were trying to conceive for 6 months now but without luck; we´ve been through many doctors but they always said that everything is ok but last week we went to an specialist and he said that maybe it is endometriosis. I am a little frustrated and a little relieved now, relieved because now we have some answers but I am also frustrated because we could have treated much sooner. Has someone dealt with a similar situation? What did you do when you found out?

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Hey, welcome to the forum 🙂

I had awful experiences with my GP they basically told me I wouldn't be able to have children but I'd have to wait another 3 years for any help. Luckily I moved house which meant moving GP's and he's been amazing, did a few simple tests which got me a referral to the fertility clinic.

I was told there 1 of the things they suspected I have is endometriosis, my consultant said that the only true way to diagnosis it is to have a laparoscopy which I did and they removed what they could of it. That helped with my awfully painful periods but not for conceiving.

Have they said what the next steps are for you? X

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Hi! thank you for your message. Yes they did me a lap and they said it is endometriosis but they said it was on a minimal stage thanks god :)

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Oh that's good, I'm glad you've been able to get some answers 🙂

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I found out I had endo at 37 after a 7cm mass was found on my ovary and tube. In the lap they were both removed by a general gynae and he found the endo all over my ureter and that the other ovary is stuck to the UL, but he told me he got it all. After the lap I had horrendous pain on a second period and went for another scan where they think my bowel is stuck to my uterus, confirmed the ovary is stuck to the ul but also that there was still a 5cm mass on the left where my ovary was.

I then started to research endo a bit more and realised that due to the complexity of my endo (which they can never be sure of until they give you a lap) that the general gynae should not have touched it knowing it was so severe without proper training or having a multidisciplinary surgical team including bowel and urinary specialists on hand.

My advice on the endo front would be ensure you look at the NICE guidance for treatment pathway if you think you have any symptoms of endo on bowel or urinary area. General gynaes keep operating on severe cases of endo and even though they possibly think they are helping they do not have sufficient training. Bgse accredited surgeons are the only ones who should be touching complicated endo as they've had the training. Anything to do with other organs or the ligaments should be dealt with by the specialists.

There is a very good FB group on endo where they even discuss which Drs are good and bad as unfortunately not all bgse centres are at the same standard (something the group leader is trying to gain evidence for and improve). Pm me if you want the group name. My general gynae told me a hysterectomy would cure my endo which is completely wrong. Had I not had access to the fb group I might have gone through with it. Scary. It's amazing when those Drs give an opinion how sure they seem of themselves! Hysterectomy is the very last option when all else has failed and there is nothing else left to try and the symptoms are too much to get on with life.

It's good that your dr even knows about endo. Mine was clueless and had the symptoms been picked up on years ago and I had treatment I might still have all my lady bits.

Good news is even with endo there's a chance to conceive naturally. The feeling is after a lap and removal of endo is the best time to conceive or there's the option of ivf if your tubes have been damaged. However each case of endo is completely different for example maybe your tubes are fine where as mine where all tangled and twisted.

Wish you all the best x

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Hi! I really want to thank you for your message, I really appreciate that you shared your story with me and it makes me reflexionate a lot! My doctor really found out the problem, it is endometriosis but in a minimal stage so he started my treatment and now I feel happier about the improvement :).

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Hi, as frustrating as it is, doctors won't do anything if you've on,y been trying to conceive for six months. I think most won't send you for any investigations until it's been at least a year as these things don't happen instantly (although you'd never believe that as when you're struggling it seems to happen instantly for everyone else!)

I have stage 4 endo. I found out I had it in 2010 when I had a very uncomfortable 7cm cyst on my right ovary which was seen on a scan when I had it investigated. They found extensive endo when they went in to remove it.

The only way to find out if you have endo is to go in for a laparoscopy (when they go in with a camera to investigate) as it doesn't necessarily show up on a scan unless you have cysts.

Best thing is to try and get referred to a specialist endometriosis centre for investigation.

I had another operation last October for mine as sadly it isn't something that will stay away forever. If you think you have it though try and get it seen to so it doesn't get worse.

There's an endometriosis forum on healthunlocked with some very helpful people who can advise on how to go about it. Good luck!

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thank you so much for your advice and support and for sharing your story with me I really appreciate it a lot :)

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Hi feel your frustration! I too have been in a similar situation. We had been TTC for 5 years and 10 months till we found out that I have endometriosis. For us we felt relieved to know the cause and have a it treated. Having unexplained infertility was worse! Before we'd seen many doctors and our first consultant was uninterested in finding out why we couldn't conceive discharged us with trying or IVF and we wont fund it 😬

I ended up with abnormalities with my menstrual cycles+ these abnormalities got me referred to a general gynae-had a hysteroscopy,( it was thought I had s fibroid) all clear but continued to have issues so saw another gynae who told me to choose between trying or treatment- I chose trying so I got discharged and gp tried to treat the symptoms but nothing worked, so again I sent back to the same gynae who recommended I needed a Fertility consultant- I told him it was unexplained for which he went "pah no such thing!!"

The gynae specified I saw his colleagues ( name of clinic) . and amazingly my GP agreed to refer me! On receipt of this referral the head consultant insisted I saw him!

We had our initial consultation with him last august and he was very efficient and took his time with us- he at this point thought I had pco and prescribed clomid for 6 months- unfortunately I had a bad reaction on my forth round and suffered chronic pain on my lower left abdominal side forcing me to cease treatment and trying.

When my GP was dismissive of my pain ( thought I was putting it on) I contacted my consultant who arranged an urgent scan all clear and when we had our follow up appointment in March he wanted to know all about the pain ,- long and short of appointment he suggested a laparoscopy ,which was done in June ,which he found and treated endometriosis.

He was surprised it was endo as he thought it was bowel in origin ( I had bowel symptoms with my endo because my endo was between my bowels and uterus)

We are seeing our consultant in just under two weeks time ( we are hoping to try for a few months before considering private IVF- since I have normal ovaries and clear tubes and hubby's sperm is fine)

Sadly endo can mimic several other conditions which is why it takes an average of 8 years to diagnose women with the condition. There seems to be lack of knowledge within the medical profession as the causes are unknown. Gynaes should be clued up on it as it is a gynae complaint the second most common gynae condition- 1 in 10 women have the condition. Unfortunately it is not curable but symptoms can be managed either by medication or surgery. Surgery can restore fertility again.

You will need to have a laparoscopy to confirm endometriosis-they can remove the implants at the same time ( to save another laparoscopy being done) and give you a better chance of conceiving. I know it's awful it's taken so long but at least you are getting somewhere now. Wishing you the best with your surgery and if you have any questions on it please feel free to ask. xoxo

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I seriously question that 1 out of 10 that is often quoted. It seems women of my mother's age were either diagnosed with fibroids or just forced into taking a hysterectomy if they had issues and had finished having children. You don't hear of many of the older generation saying they've had it.

Since they have no clue why it occurs I would start with the presumption that all women have it to some degree and its just that it develops more in others plus in some like me you can be relatively symptom free.

Its good that on the endo forums it seems the younger generation isn't being fobbed off like I was at 16 just saying periods are awful you just have to deal with it.

Anyway my two pence worth for a Friday evening.

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My fertility book by top gynaecologist says it's 1 in 10 women have endo. Though I agree for some women without symptoms can often go undetected. I was fobbed by period issues for years and years. I hope attitudes in the medical community are changing. More research would be helpful though...

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Hi jess! thank you so much for sharing your story with me. Thank gods my doctor was really efficent and he found it right away and i am now on treatment. I feel a little relieved now but we will have to see how everything is going and hoping for the best!

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Has your consultant booked you in for a laparoscopy? Endometriosis can only be confirmed by a laparoscopy. If you have any questions on the laparoscopy do feel to ask me. Its good you have a great consultant makes a huge difference. Ours is brilliant and we have complete faith that he will help us have our baby. xoxo

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Hi kmora. Maybe now they may do a laparoscopy to check the extent of the endometriosis and treat it with laser,if appropriate. It's annoying have to wait to be diagnosed and sorted out, but you're on your way, and let's ope it is not too long before a decision is made as to what treatment you need. Good luck with it all! Diane

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