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I need help and advice pronto!! ENDOMETRIOSIS???? WTF???

(38 Posts)
mummy2olivia Fri 08-Aug-08 10:01:08

In a nutshell, I have had a shit time TTC- let me sum it up-

15 months to get a BFP
MC at 9 weeks plus retained products and infection and haemorrhage
Cycles finally kick in 8 weeks later- very painful
Chemical pregnancy last weekend
Everybody around me is getting up the duff faster than I can fricking blink!!! smile

I'm sure there are loads of you on here that can relate!! smile And some of you prob know how hard the last few months have been.

However, there has been a development and I'm sorry this is so long but I really need to make sense of what is happening to me sad

When I found out I was pg back in April the thing that alerted me that there was something wrong was a pain in my right hip. I mentioned it a few times on mumsnet and put it down to stretching/moving/things changing etc. The pain carried on, an intense stabbing pain in my pelvis, constant aching, almost like it was in the bone of my right hip and in my side. I even panicked that it was ectopic and went to A&E!! blush

However as I said before I lost the pregnancy. And somewhere over the course of a very longwinded and messy miscarriage the pain in my side faded. The pain came back about end of June- the same pain, intense aching in my right hip, lower back and around the top of my buttocks. The pain was so bad at one point that I thought I had bumped my coccyx and hadnt noticed. 2 weeks later my first AF came so I assumed that I must have ovulated and the pain was something to do with that and the MC and everything getting back to normal. When my first AF came the pain went- just faded away. after 2 weeks of intense pain it just vanished. I did speak to my GP about it at this point and it was put down to simple back pain?!

Because I had my 1st AF we returned to TTC and I noted that as soon as I ovulated the pain returned, not as bad as the previous month, more like 2 weeks worth of period pain plus the shap pain in my hip and round to my lower back but right in my pelvis. Spoke to DH about it at this point and he reminded me that my period pains have got worse recently, before I got pregnant, and that I have been having period pain in my buttocks!! Me and DH had laughed about this at the time but it really is quite a painful place to get period pain!! He felt that I should go back to GP- which I did yesterday.

I told the GP all this just as I have said here (long appointment blush) and he listened and said that what I had described hints to him that I may have endometriosis. He stressed that he wasnt saying I definitely did but he felt that what I was saying was a classic example of endometriosis exacerbated by the MC to the point that I have noticed it more. He said I had 2 options- If I was desperate to get pregnant ASAP then he would refer me urgently. But if I was willing to wait a while then the second option would be to go on the pill for 3 months. This would do a number of things- dampen the endo back down (if it is present), give my body a rest and bring my hormones into line and also 'kick start' my fertility. He was very nice and made it very clear it was my choice but in his experience, the pill for a short time, was a good treatment. And if i remain symptomless for the duration of the 3 months then it is almost def endo and he will refer me to gynae. I took the pill option.

But I have a few questions (I hope Attilla sees this!!!)

- is this a standard treatment???
- Is endo normally diagnosed with a laproscopy? Could I do this privately whilst taking the pill?
- Are the symptoms I describe really classic symptoms?
- My GP said that endometriosis can be so mild that you dont feel symptoms til something triggers a flare up such as a pregnancy- is this right?

I'm sorry this is such a long post I could just really do with some advice, support and som e wise words. Thanks in anticipation. x

mummy2olivia Fri 08-Aug-08 10:01:47

O my God- thats the biggest post ever!!! sorry blush

mummy2olivia Fri 08-Aug-08 10:30:55

bump sad

eleveld Fri 08-Aug-08 11:45:23

Hi

I probably can't help much on the medical side but I have endometriosis and, until I had two large cysts removed 2 years ago, I had crippling pain similar to what you describing.

When it came it was like nothing I have ever experienced, took my breath away and at times I'm sure I nearly passed out with it. Once I was on my own when it happened and I was just about to dial for an ambulance as I was practically passed out on the bed with pain when it just suddenly stopped. My consultant said the pain was caused by the cysts getting themsleves wrapped up around the blood supply to the ovaries. Normally they manage to unravel themsleves which is why the pain stopped as suddenly as it started.

I had an MRI scan which the consultant said 90% confirmed it was endometriosis and then the absolute confirmation was with a laparoscopy (the send away part of the tissue they remove to be analysed which confirms the diagnosis). I think surgery is the only absolute way of diagnosing but I think consultants can be pretty sure from things like an MRI scan.

Hope you get the correct diagnosis and treatment soon

mummy2olivia Fri 08-Aug-08 11:49:21

The pain is pretty bad and now and again I feel dizzy with it. I just can't believe how quickly it came on. Up until, erm 9 months ago I had normal periods with very little pain (prob a day or so) now the cramping comes in waves for about 2 weeks before period comes. Can endo start just like that? Has it affected your fertility at all?

Thanks for replying x

eleveld Fri 08-Aug-08 11:53:00

Hi

Yes it can start like that, it did with me. Normal periods with no pain up until a few years ago. Unfortunately it has affected my fertility, am just trying to start IVF but may not be able to as my hormone levels are all over the shot!

Good luck

x

eleveld Fri 08-Aug-08 11:54:20

sorry wanted to add.

It certainly doesn't always affect fertility. There are plenty of people that get pregnant with it and I have been told that, if you can manage it, getting pregnant is the best thing as it eases all the symptoms!

x

mummy2olivia Fri 08-Aug-08 12:00:12

I think its really weird- the pain is bizarre, like a hot poker in my hip!!

And its not all the time- I'll have a few twinges for a bit then it fades then starts again after a while. I thought th epain would be constant?

I think I need to push for a proper diagnosis...

eleveld Fri 08-Aug-08 12:03:44

My pain would come in waves. It would last for about 15/20 mins, really badly, and then just suddenly stop

mummy2olivia Fri 08-Aug-08 12:08:17

I can see why he would assume I have this, looking at info and your experience of it, it does look pretty likely although compared to some I must have it pretty mildly I reckon. I can cope with th epain, I'm rock hard!! grin

DH is gonna look into private healthcare to get a quick lap done to confirm it. Am not going to assume.

mummy2olivia Fri 08-Aug-08 12:09:25

Its odd as well that th eMC seems to have flared it up- a lot of sites seem to recommend pregnancy to improve symptoms!!

Inquisitive Fri 08-Aug-08 12:11:56

I've had endo fixed by taking the pill for three months straight - I say fixed because I'm pregnant now, so I assume it worked! I also had the passing out type pain, and that was massively improved as well.

mummy2olivia Fri 08-Aug-08 12:17:43

So it does work?

How were you diagnosed inquisitive?

Inquisitive Fri 08-Aug-08 12:33:54

It certainly seemed to work for me.

I was diagnosed by a laparoscopy when I was 18 - after being told for ages that it was just normal period pain that all teenagers got (hmm - really? fainting and vomiting is normal?!) The laparoscopy was a really easy procedure - I would have been in and out in a couple of hours except I reacted badly to the anaesthetic and my blood pressure practically disappeared! But even with that I was out the same day.

I was put on the pill for three month stretches for a year (but I wasn't TTC - don't know if they'd have bothered with it being that long if I was older and wanting kids) and after that I never had a problem with pain (I still get cramps, but nothing pain killers can't cope with). And it only took a couple of months when we started TTC.

Hope that's some help - good luck with getting it sorted out!

mamadiva Fri 08-Aug-08 12:36:02

It may have nothing to do with it as just jumped onto the tread and didn't read but am assuming you are worried about concieving.

One iof my very close friends was diagnosed with Endometreosis at 13 and was told she would probably never have children but they would allow her totry with fertility treatment when she was old enough so when she was 21 she decided to try it and they gave her the date for march 2006.

She fell pregnant naturally in January 06 and has just had her second child in Fevbruary of this year so.... LOL just thought Id tell you that.

mummy2olivia Fri 08-Aug-08 13:20:05

I think if I have got it, it must only be mild?? I'm not vommitting with the pain although it can make me feel wiped out and it can be intense at times.

I just hope that if it is that it gets treated properly.

Thanks for the positive story!!

iwillbepositive Sat 09-Aug-08 15:43:01

Hi m2o

I have been ttc#2 for 2.7 years and had laparoscopy and lasering for endometriosis a couple of days ago. I had no pain at all from the endometriosis and it was only suspected because we tried IUI and the cycle was cancelled due to overstimulation and a cyst which looked like an endometrioma.

The odd thing about endo is that you can have really bad deposits with no pain or not much disease with loads. Your GP may well be right that 3 months on the pill will calm things down. I am now doing the same for 2 months, even having had the endo removed.

It can definitely affect fertility (although as had been said, it doesn't always) and I too had a mc and then a cp. The endo can create a 'toxic' environment for an early embryo as well as having a mechanical effect on conception.

So I would trust the GP and maybe ask for a laparoscopy if you have no luck after a few more months.

Good luck!

You might find some good info here;

www.shetrust.org.uk/

I was diagnosed with it 7 years ago, I was having a laparoscopy for something else but the consultant said to me afterwards that he's found it while rummaging about. At that time I had no symptoms.

7 years on my periods are heavier and more painful, I pass clots and sometimes flood. Some months are worse than others. I don't get really, terrible pain though.

mummy2olivia Sun 10-Aug-08 17:19:14

bumping just in case attilla is around grin but feel free to reply even if you arent attilla grin

mum2jai Sun 10-Aug-08 18:10:56

Hi! I was diagnosed with endo when I was 22, many years ago, because I had an ovarian cyst. I also got the cyclical pain you describe. When the cyst got really big I had pain almost constantly for 6 months but it got worse around my period.

I lost my ovary because I waited so long to get treatment so I would ask for a referral to a consultant ASAP. They can diagnose a certain amount by scans but they really need to do a laparoscopy to make sure - and they can treat at the same time by laser so well worth doing.

My endo was pretty aggressive and after major surgery and drug treatment it came back hellishly. So I ended up having more surgery and was then on drugs for ages. After that I went on the pill - it definitely does help to control things but I think you need to get what's there treated first - and then it can control its return.

GPs, and even some consultants, are not very skilled at dealing with endo. So I think you need to see someone who knows what they are doing. It can make all the difference when it come to preserving your fertility.

We were always told that we would have great difficulty conceiving. We tried for ages, and 2 weeks before IVF, found we were pregnant with DS1 6.5 years ago. When I was bf him, I unexpectedly got pregnant with DD. And then 2.5 years after she was born I had DS2.

In Feb, I found myself unexpectedly pregnant with DS3 (still think of myself as infertile so not good at contraception) but 2 months ago at nearly 21 weeks he died. It's been devastating but it's not endo-related, we're told. And we do still count ourselves extremely lucky given the chances of me getting pregnant with my history. We'd love to try again, but I'm 39 now and, as I say, I still think of myself as infertile so I'm not holding out much hope.

Endo definitely improves with pregnancy but can also cause infertility and early miscarriages. I would definitely go see an endo expert. Hope that's of some help.

firststar Mon 11-Aug-08 14:14:29

Message withdrawn

helenlouisey Wed 13-Aug-08 21:03:36

Hi Mummy2Olivia. I would completely agree with mum2jai that you should go and see a specialist rather than a general gynae or letting your GP treat you. Endo is a very complex disease and effects everyone differently. Some people have a lot of pain, and very little amounts of endo, and some people have no pain or symptoms (like myself) and have severe endo. There is no cure for endo unfortunately, and whilst the pill may help things keep at bay for a while it won't cure it. Let me know where in the country you are, as can recommend an excellent consultant in London if you'd like one. Good luck.

quickerthistimeplease Wed 13-Aug-08 21:31:44

I haven't read through all the posts properly but after TTC for a year or so I had a laparoscopy etc and they said I had mild endometriosis. After a few more months of TTC I had laser treatment on it by Prof Sutton in Guildford. (Think he is a world expert).Turned out it was actually quite severe and there were some big cysts as well. (I had aboslutely NO symptoms at all).Anyway- got pg the next month! And after trying again for only 2 months am now pg with DC2.
Def go and see a proper gynacologist. If you have private health insurance don't mention anything to do with fertility to the health company when you need to get clearance for a referral- just say it's painful etc. (Sounds as though you are in loads of pain anyway) I got all my treatment done privately even though I wasn't covered for anything to do with fertility.

mummy2olivia Wed 13-Aug-08 21:37:17

Thanks guys.

I have been in a lot of pain, but most of the time i am fine.

Am a bit concerned today as am a week into taking the blasted pill and have started with my usual pains today- low back ache, aching hips and aching pubic bone. DH thinks i may have to give it til next month to see a real improvement but I am even wondering whether the GP is wrong and I have arthiritis or something!!

The pain is weird- I'm not doubled up or in agony, my pelvis just aches and I just feel...well...uncomfortable. Nowhere near as bad as 2 months ago....

mummy2olivia Wed 13-Aug-08 21:38:25

Can you still get the pain whilst on th epill? will my body just have to get used to the pill before I see an improvement?

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