Newly diagnosed and overwhelmed; trying t... - Endometriosis UK

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Newly diagnosed and overwhelmed; trying to conceive


Hello, I'm new and hoping to get to know others.

I had a laparoscopy 2 days ago and was diagnosed with endometriosis. It was too extensive for them to do any treatment at the time so I will get follow-up to discuss options. I'm feeling a bit overwhelmed.

I guess I am lucky to have had a consultant who was really clued up, who sent me for the surgery. I came in complaining of pain during sex, and other mostly mild pelvic aches and pains. Small persistent cyst was seen on ultrasound. I have been trying to conceive for nearly a year without success. Didn't all add up to much in my mind, so it was a shock to find out what a complete mess I've got inside me.

My tubes were flushed out and the surgeon said I "could be fertile" so should keep trying. Naturally I wonder what will be the next steps, surgical treatment and/or IVF? Will just have to wait for my next appointment to see. Meanwhile the stats are not very encouraging :(

13 Replies

Hi there! Hope you are well and recovery ok. I am in the same boat as you! I have had 2 operations and 2 iui treatments to help me concieve and it's not worked out for me. I am on my way to the hospital now for my follow up appointment to see what the next step is going to be. They did mention ivf before. How old are you? I am 29. Did you get blood checked for your FSH levels and has your husbands sperm been tested x

Hi, thanks for your reply! I hope the appointment went well - what did they suggest? How long have you been trying?

I'm 36, so time isn't really on my side :/ I have had all the hormones checked and partner's sperm has been analysed and all fine.

Hi I'm in same position as you. I have had two laps, the first diagnostic and to remove endo cysts and the second to cut away all of the endo on my bowel, bladder etc. I had to have the hormone injection 12 weeks before my last op and currently waiting for periods to return. Desperately want a family, I'm 37 and time is ticking. The whole process so far has taken a 10 months from diagnosis but I feel like I'm nearly out the other end. All of the surgeons and endo experts advised us that we were more likely to conceive after the endo had been removed and similarly Ivf is more likely to work without the endo so we decided surgery was our best option. We didn't want to be another year down the line still not pregnant and still having all the endo. Plus, the endo isn't going to go away on its own so it will improve your health to get it removed. perhaps keep trying in the meantime until you have your follow up appointment. At 29 you have time to try for a while before you decide xx

Hi there, it does sound like we are in much the same boat! I'm 36 actually so similar age as well. Had you been trying for long before your diagnosis? Are you on the waiting list for IVF or just seeing how it goes following the treatment?

I guess your experience gives me an idea of what might be in store for me next. I think I will have a lot of reading to do - just ordered some books :)

I hope your periods come back soon and that you get pregnant before too long. xx

Hiya! yes we do sound like we're in the same boat! That's kind of nice but also sad to know someone feels like I do. We were trying for 18 months before endo diagnosis. Then had to stop trying for the last 10 months to have all the treatment. I had my big endo op about 8 weeks ago and I'm still recovering. The fertility clinic have said to to wait till my periods start up and then to try for 3-6 months. If no success they will discuss out next options which I assume will be some form of ivf. However they have said that as my tubes/ovaries have little damage (most endo was recto/ bladder), I should have every chance of conceiving naturally. It's just the dreaded waiting again now for my cycles to start. It was really hard making the decision to delay trying to have the treatment/surgery as that's all I wanted was to be a mummy,but at least now I know its given me a window during which I have a better chance of it working. What also convinced me was how much better they said I would feel got to consider your health and well being in all of this. Xx

It sounds like it was the right thing to do. It's good that your tubes and ovaries are fine - and that the doctors think you have a good chance. One of my friends had stage 3-4 endo treated about 5 years ago, and just recently gave birth after trying for only 9 months (and with a few years having passed since the treatment). Her doctor was also very positive about her chances. The stats don't sound great but I guess it just depends on how the endo has manifested for each individual woman - so our doctors' judgement on that is important. Did you have a lot of pain before, and are you feeling better yet after the treatment? xx

Thank you. I had really painful periods but wasn't too bad at other times. Only when the cysts got big did I feel pain in my groin. I'm still quite sore to be honest but it's not as bad as I thought it would be. I wasn't so prepared for my first lap so that seemed worse to me. I haven't had my first period yet do not sure whether it's made a difference yet. It all was very daunting to me, and I needed counselling to help me through it. Its natural to feel overwhelmed and scared but try to remain positive. They have found it now so you know what you are dealing with, so you can start to get your head around it and at look to ways to help you. Do lots of researching and try to work out what's best for you. I now follow the endo diet and try to eat healthy and look after myself. I've also joined local endo groups on Facebook and have met new endo friends which live locally. We get together and gave a cry/moan/laugh. Good luck, and I hope you get your follow up appointment soon xx

If you have not been seen in a bsge specialist centre I would get a refferal from your gp, check out the bsge list for o e close to you, good luck xx

in reply to Tboag

It was, thanks. X

Hi Sandarella13! Your posting reminded me of my journey, of which I'm still in the midst of. All I can say is to keep asking questions, stay on top of appointments and arm yourself with knowledge so that you don't get shoved aside by gps and specialists. Explore all the options. I'm only 32 and my husband and I have been trying for to conceive, off and on, for just over 3 years. A recent laparoscopy recently confirmed a diagnosis of endo. Please update us on what happens! :)

Hi, I checked out your page after you answered my question. I hope you don't find it creepy!

When I started ttc I was told that only 40% of women with endometriosis manage to have children. It got me very down. I saw this the other day which is positive also a doctor I met at one point said that eventually most women with endometriosis manage to conceive. I was extremely pessimistic and always thought that would not be me.

Also there has been to much scare mongering about fertility decline after 35, this article is great

Also I have heard you are meant to be more fertile after a laporoscopy.

I would recommend checking if you have any immune issues that may be impacting on fertility. There are some clinics in London who do that but it is pricey. In my case it was worth having it checked out and I wish I had done that sooner. My third IVF was successful because they suppressed my immune system with intralipids, steroids and baby aspirin.

My consultant said acupuncture does not help when women have fertility treatments and can negatively affect them (so I stopped which was good as I was paying a fortune. I did however find it to be good for pain management).

I don't think I am allowed to name names but I went to a Zita West trained nutritionist in London, she has her own clinic (she has been mentioned on a fertility board). She is well read and very skilled and put me on resveratrol and diet high in omega 3 who really helped with pain management, it also meant to help with fertility (studies have shown that this is good for endometriosis and resveratrol is being used in clinical trials now). Another thing is Green Tea it has a component that helps slow down growth and research backs that up too. I like it for energy as endo makes me lethargic most of the time. I was told by someone to only drink it before ovulation though.

It is really easy to get overwhelmed and doctors don't help. I felt so low when I was originally diagnosed. I read lots but because of my frame of mind that did not make me feel better.

I am optimistic for you. I have seen so many of my endo friends succeed.

Good luck x

in reply to Bledie

Hi there, thanks very much for all this info! The first article you've linked is very encouraging - really good to know the majority of endo sufferers can expect to be able to have a baby, even if it takes a while :)

I've come across Jean Twenge's writing before, I too was really happy to learn that natural fertility doesn't decline as rapidly with age as previously thought (although IVF success does go down steeply). I've read some other stuff that suggested fertility goes down for some women - the unlucky ones that develop issues (like endo, I guess, or other conditions) - but for the women who remain issue-free, they mostly remain pretty fertile into their early forties.

I will check out the immune testing. Thanks for the nutrition links too. I don't know much about this area and haven't thought much about it. One thing though is that I recently started a gluten-free diet and feel much better in a lot of ways. I had problems with my digestion which have gone, but I also feel I have more energy now. Not sure if issues with gluten/wheat have anything to do with endo.

At my follow-up appointment the consultant referred us for IVF with no further surgical or medical treatment. The wait is a year and we will get 2 rounds on the NHS. In the meantime, we will just keep trying.

All the best! x

in reply to sandarella13

No worries. Just glad I can be of help. I liked going to the nutritionist because there is so much info out there and I did not know what to trust. The first session is the most expensive one. In retrospect I feel it was very good value for money as it improved my well being. Mel bases her work on research which I like.

Sounds like you have a good plan in place :) I ended up going private (probably not allowed to say where but I was very pleased with them and my consultant was incredibly nice and sensible) because I was meant to wait I think two years and I got too impatient. It is however very expensive.

One other thing while I remember. I instructed my partner to take Wellman Conception. There wasn't really anything wrong with him but it was interesting to see that the sample he gave after taking it for, I think, couple of months was better quality. I therefore tell all my friends who are ttc to make their partners or husband take that or something similar.

Anyways, good luck. I have my fingers crossed for you.


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