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Endometriosis - Laparoscopy - Pregnancy - Miscarriage... when should I check my endo again?

(17 Posts)
EricaJ Mon 20-Oct-14 17:58:55

Hi ladies,

I am hoping someone will be able to throw some light/share some experiences ...

Long story short: after 2.5 years of unexplained infertility, 1 mc and 1 cp, my gyno decided to perform a laparoscopy and voila! They found some very mild endo adhesions, removed it and I got pregnant two weeks later. Unfortunately I mc-d again at 7 weeks.

So the laparoscopy took place, beginning on April, I mc end of May... we took a little break in between and we have now been trying naturally for two months, I am on the 2ww for the third attempt.

Does anyone have any experience/knowledge of when I should get checked for endo again? I know it would probably be best to see my gyno but after having two rather traumatic D&Cs in June and July, I am trying to stay away from hospitals and give myself a break. However, I can't stop thinking 'what if the endo is back?' I already wasted 2.5 years of TTC because of it and after three years of TTC, it's all a bit much!

Thanks!

allchatnicknamesgone Mon 20-Oct-14 18:19:47

Hi,

So sorry to hear about your losses. I can't answer your question, but wondering if you wouldn't mind giving me some info about endo?

I'm just in my 2ww from an ivf round. I had unexplained secondary fertility. Everything went according to plan and I had embryo put back in, but in these 2 weeks my mind has been wandering.

Maybe I have endo, but it has never been investigated? I thought endo showed up on scans, but I now know that is not the case.

So, can I ask, apart from the mc's, did you present any other symptoms? did you ever have a feeling?

Hope someone with similar experience comes along for you to get your question answered…

Thanks.

EricaJ Mon 20-Oct-14 18:49:35

Hi Alice!

I got scanned lots of times and they never saw anything. My gyno said that the only 100% reliable way of diagnosing endo was a laparoscopy.

Actually, I did have some symptoms, just not the usual one (extremely painful/heavy periods, pain during sex etc). My cycles were getting shorter and shorter and I would sometimes have spotting for up to five days before my period. Initially they thought it may be a symptom of low progesterone but it turned out it's one the less-common symptoms for endo.

Best of luck with your IVF! Got everything crossed for you!

allchatnicknamesgone Wed 22-Oct-14 10:12:07

Thx for getting back to me! Sorry no one come along to help with your questions yet.

I had neg test today. Bit weepy, but I was sort of expecting it. I feel in an odd place though. You pin so much on ivf.

Anyway, I think my next positive step is to try and have a lap just to rule it out because I didn't have fertilisation probs during ivf, it seems to be the implantation. I thought once the embryo got put there is would stick.

Did you do everything through nhs and was waiting list long for endo? Is there some hospitals better than others or is it quite a standard procedure for gynaecologists?
Thx x

EricaJ Wed 22-Oct-14 15:55:58

Hi Alice,

I am so sorry to hear about your BFN. I haven't had IVF but I tried IUI twice before endo was 'discovered' and I was gutted both times.

Unfortunately, I've had all my infertility treatment abroad, covered my health insurance so I have no idea how it would work with the NHS.

However, my gyno here said if that you have unexplained infertility and clomid/IUI/IVF is not working, it's just common sense to check for endo, since up to 30% of the cases have no symptoms. I have spoken to at least three other ladies that were going crazy about their 'unexplained infertility' after years of trying, to then get pg as soon as the endo was removed.

I have read that if endometriosis is properly removed by laparoscopy/surgery, it shouldn't come back in at least 9 months so I am trying to stay positive.

Best of luck!

EricaJ Wed 22-Oct-14 17:34:38

Erm why do I keep calling you Alice? smile

allchatnicknamesgone Wed 22-Oct-14 18:03:17

Ha! Not sure. Thought it was autocorrect or something.

I went to GP today. (Phoned with assumption I'd get appointment in few weeks).

I wanted to see if they'd refer me for a lap. They said that none of my tests pointed towards it and that all hormone tests and scans were fine. I tried to explain that if I had it only a lap could be done for diagnosis but I think she thought I was grasping at straws because is just failed ivf. She seemed to think ivf was all about probability and a lot of it is down to luck. I can see that but I just don't want to waste my 2 frozen embryos based on nothing but luck alone.

Maybe appt was too early as I wasn't in right frame of mind to argue.

Sometimes I find the Internet maybe gives you too much information!!
Thanks for replying xx

worriedmum100 Wed 22-Oct-14 18:56:55

Hello [waves at Erica]

Erica and I have a very similar history. I have been ttc dc2 for around 21/2 years. Initially it was unexplained. I had IUI which worked first time but I miscarried in February. I had another I UK which was unsuccessful. I finally went for a private scan with a specialist in defective c section scarring (I was convinced at this point that that was the issue). He saw endo on the scan straight away. I don't think it's usually diagnosed that way but he was clearly a top expert in this stuff and was able to diagnose it. I then had a lap in April where most of it was removed. My only symptoms were nausea and brown spotting mid way through my cycle.

I fell pg right away but had a MMC at 9 weeks which took two D&Cs to resolve . 3 cycles later and AF has just arrived. ..again....

Erica - I'm also worried about Endo coming back but so far my symptoms haven't returned. I've made ano appointment with the fertility clinic for next week to talk through options. I really dont want IVF. It feels like such a massive step and after everything that's happened if it didn't work I'm not sure I'd recover from the sadness. What to do? I just don't know anymore ��

EricaJ Thu 23-Oct-14 11:01:11

HI Worried

I know what you mean. I am expecting my period to arrive on Monday. I will then make an appointment with my gyno (who also runs a fertility clinic) and see what he suggests.

I really want need some time off hospitals and the (increased) emotional roller coaster of having treatment, but I need to balance that with doing our best to achieve and maintain a pregnancy.

I checked on the endometriosis.org.uk as well as another medical website, and if endo is removed via surgery, it shouldn't come back within a few months. According to some studies, there is a fertility increase that lasts for around 9 months after a lap.

I am exactly on the same page re: IVF. I am not sure I am emotionally fit to go for it ... We will discuss it all with the doctor but I doubt I will be in the right place to make any decisions until January.

EricaJ Thu 23-Oct-14 11:03:47

P.S my biggest fear re: IVF, it would be for it to be successful and then miscarry. I don't think I could stand it so maybe I am just no ready at the moment.

allchatnicknamesgone Thu 23-Oct-14 11:49:09

Hi. I know what you mean about ivf, but they do give you lots of drugs after implantation to maintain pregnancy if that's where the problem lies.

I know someone who had recurrent miscarriages, but was able to hang on to her pregnancy. Also, although I've just had a bfn so completely gutted, the process of ivf was really ok and if you are on short protocol you are only really taking drugs for about 2 weeks. X

EricaJ Thu 23-Oct-14 12:08:22

Hi Allchat,

That's really encouraging. Most people I have spoken to told me that it wasn't anywhere near as bad as they thought it was going to be.

Personally, I am more worried about being able to cope mentally, if you see what Maybe I have this idea that 'we can always try IVF' and if we do it now, and it doesn't work, we'll have no alternatives left and I may not be ready for that. Quite irrational really, but there we are!

Best of luck! Do you think you'll try it again?

allchatnicknamesgone Thu 23-Oct-14 12:20:38

I know what you mean, but maybe you'd feel more supported going through ivf process. I haven't been through mc myself, but I hear a lot of bad things about how it is handled. I would think a miscarriage following ivf is very different because of the level of care. Also, there is early pregnant scanning. Think they do it as early as 5 weeks.

I'll do it again because I have some frosties. But I'll keep trying in meantime and wait to see consultant. Because we had such successful fertilisation etc, I feel that something is going wrong for it not to implant. I have this feeling that our eggs and sperm have been meeting all this time, but something is wrong with them implanting. That's why I thought endo when I saw your post, but having seen the GP yest she wouldn't refer me because she said there is nothing in my medical history that points to it.

X

EricaJ Mon 03-Nov-14 07:59:17

Hi ladies!

Quick update! I saw my doctor last week and he said that the endo would not have returned just a few months after removing it with laser.

However, he did recommend I have a repeat lap if I have not got pregnant by January/February. That would be around 9-10 months after the lap.

Good luck!

allchatnicknamesgone Tue 04-Nov-14 17:37:12

Good luck then with lots of dtd over christmas!

EricaJ Wed 05-Nov-14 17:01:39

That's the plan AllChat! He He! How is it all going with you?

allchatnicknamesgone Wed 05-Nov-14 22:08:17

Ok. Seeing consultant next tues to chat about failed icsi and next step. I have a few questions. Can do frozen cycle after 20th nov, so need to know what that will involve. Decided to try acupuncture too. Hoping her experience in fertility will also help me.

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