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

[mummy2olivia]

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

Hi, Yes you can still get the pain whilst on the pill and it may take a little time for it to build up enough in your system to have an effect. Your DH could b right and you may have a better response next month. However it could also indicate that the treatment isn't the right one for you.

I have endo. I was diagnosed by laparoscopy 4 years ago. My endo is widespread and therefore they can't laser it away. The bits that effect me most ae growing into my bladder. I get several types of pain. Theres the bladder pain which at its worst means i have to muffle my screams when i pass urine and dig my fingernails into my thights to distract from the pain a little. It also hurts before and after i go. I have the intense period pains in my stomach and back. I have what feels like intense cramp somewhere inside that having talked to people who have been through it seems to be similar to contractions. I have the sensation that there is not enough room in my pelvis, like a strong pressure wich is more uncomfortable that painful, as is the sensation that my organs are sticking or rubbing together. I also get some 'spasms' during sex that are pretty painful. What i am trying to say is that endo can show itself in many ways including as others have said not at all!

The good news is, mine was mostly controlled whilst on the pill. I have also had two lots of treatment which has involved 6 x monthly injections which put me through a temporary menopause. The latest one i finished recently and was in preperation for TTC. I had my first period since then and things are 100 times better. Not totally fixed by any means but i am much less anxious about having to have a monthly period for a while something that i couldn't have coped with before. There are lots of different treatments out there, including some alternative therapies and a special diet. Good luck and i hope the pill does work for you

I want attila to see this before I go on holiday!!! Sorry but am gonna bump til she does!!

Hi Mummy2olivia

Have only just returned from my two weeks holiday so am hoping you see my reply to you before you yourself go on holiday.

Have read your initial posting.

Re your comment:-
"But I have a few questions (I hope Attilla sees this!!!)

• "is this a standard treatment???"

The pill is one option as this dampens down the endo whilst taking it. However, once you stop taking it it can recur.

• "Is endo normally diagnosed with a laproscopy? Could I do this privately whilst taking the pill?"

Yes to your first qyestion. Think it is certainly possible to have a lap operation whilst taking the pill but you would need to discuss this with your consultant.

Endo is normally diagnosed during a lap. From reading what happened to you in your initial post I think it also sounds like endometriosis. The pelvic pain experienced along with your mid cycle pain and pain in the rectal area (have had that as well) are two sym,ptoms associated with endometriosis

"- Are the symptoms I describe really classic symptoms?"

I would say yes they are. The four main symptoms of endo are pelvic pain, subfertility, mid cycle pain and painful periods. You can also have painful sex (this is also an indicator of endo). Basically any symptoms that are cyclical and that get worse duyring menstruation may be due to endo.

-"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?".

This can happen but not always. My periods were extremely painful due to endo from the time I started menstruating at 14. I had many of the classic symptoms associated with it - extremely painful periods, pains in rectal area and stomach, pains down legs.

In my view you should be referred to a gynae for further evaluation.

Would suggest you look at www.endo.org.uk
which is the webiste of Endometriosis UK which campaigns for greater awareness. It also has a great message board and a helpline number you can call.

HTH and good luck

Attila x

Thank you Attila x

It is getting pretty hard. I'm usually quite chipper and can almost laugh at the bad luck we have had but it is getting harder and harder. I'm not quite ready to join the hut yet but I am finding it very hard to stay cheerful. Especially when the GP mentioned that it could have been caused by retrograde bleeding during my MC- didnt know what he meant but when I realised what that was, I felt like I'd been kicked. I bled for 8 weeks during my MC and begged for a ERPC but instead they just pulled 'products' out with forceps while I was awake which made me bleed more- I'm starting to wonder how things could have been

mummy2olivia

This was also not caused by something you did or did not do. The causes of endometriosis are unknown; I feel there are several factors involved.

I'd call the Endo UK helpline on 0808 808 2227. They are knowledgeable and can give support. Do read their website too; it has helped me a lot.

Is GP going to refer you to a gynae; you should be seen as a matter of course.

Attila x

He has not mentioned seeing a gynae but I have private healthcare through DHs work so will be seeing Richard Kennedy who is an endo specialist as soon as I get back from my hols.

Anniemac - thank you for your sympathy. It's been awful losing Jai but we're surviving.

Well, am back from my hols- after the first few niggles whilst on the pill, whilst on holiday I was completely pain free in what would have been the second half of my cycle. Am coming to the end of 2nd cycle on pill and have had a couple of niggles like last time at first half of the pack but 2nd hlf (when i would normally be getting a lot of pelvis pain) is so far pain free. When i was put on the pill the GP said that a lack of pain would give a more definite indication of endometriosis if not, then an indication of some other gynae prob. So am kind of resigned to something being wrong and its coming up to 2 years since having my coil out.

What I am really confused about now though is what next??? Do I ask for a gynae referal? come off the pill and carry on TTC? (this is what GP recommends) or do I ask for a fertility clinic referal? Everyone seems to have a different opinion and I really dont know where to go with this- I want a baby but i also want my health to be looked after too. We were going to go private but after hearing some recommendations for local NHS consultant we have decided to save our money and go NHS. What is my next step?

I think the GP should refer you to a gynae consultant anyway at a subfertility unit. I also think you need to talk to this person at some length about your menstrual and gynae histories. Would also suggest that you do not attend these appointments on your own - moral support is vitally important besides which the other person can ask questions.

Write down anything you want to ask well ahead of time - no question is daft.

Look at www.endo.org.uk and also consider phoning their helpline too.

Thank you attilla- I was hoping you would reply!!!

It is so difficult to know what to do- GP was of the opinion that I should just carry on TTC but really don't think this is wise- surely the longer you go on without a proper diagnosis or treatment, the more damage is being done?

I think a referral is the way forward now- I want to know what is going on.