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

37 replies

mummy2olivia · 08/08/2008 10:01

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!!!

I'm sure there are loads of you on here that can relate!! 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

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!!

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 ) 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

OP posts:
mummy2olivia · 08/08/2008 12:17

So it does work?

How were you diagnosed inquisitive?

OP posts:
Inquisitive · 08/08/2008 12:11

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 · 08/08/2008 12:09

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

OP posts:
mummy2olivia · 08/08/2008 12:08

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!!

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

OP posts:
eleveld · 08/08/2008 12:03

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

mummy2olivia · 08/08/2008 12:00

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...

OP posts:
eleveld · 08/08/2008 11:54

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

eleveld · 08/08/2008 11:53

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

mummy2olivia · 08/08/2008 11:49

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

OP posts:
eleveld · 08/08/2008 11:45

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 · 08/08/2008 10:30

bump

OP posts:
mummy2olivia · 08/08/2008 10:01

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

OP posts:
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