Does this sound like endometriosis?

[Hope24]

Hi guys,

I am losing my mind here a little and was hoping if someone could help me out. My husband and I have been ttc for about 15 months with no luck. I've always had very irregular periods where sometimes I would randomly miss a month. When I was younger my periods were very painful and heavy. I even remember one time I had terrible period cramps that I couldnt move. I vomited, felt faint and was very dizzy. Didn't think much of it at the point. Although we did visit the doctor who said periods take time to settle at young age and mentioned that pain is normal. Fast forward a few years and I married my DH. My periods were ok, not too painful and not too heavy, but still irregular.

At the start of this year, I woke up one day in the middle of the night with very, very bad pelvic pains. It was like I was being stabbed in my vagina and rectum repeatedly ( sorry tmi :s). I took some painkillers and hoped to sleep it off. But it was still very painful and asked my DH to take me to the hospital. The hospital did a TV scan and informs me that I have a bleeding cyst which will most likely reside on it own. Fast forward a few months and the pain is till there. The confusing thing is that the pain is constant, through out my cycle.
The symptoms I have are;

• pelvic pain almost all the time
  
• heavy feeling in lower abdomen
  

-bowel problems ( mainly constipation)
-bloating

• rectal pains
  
• back pains
  
• lots of clots during my period
  

-headaches
-very low mood and anxiety.

I have had my first specialist appointment in September and she thinks it's pelvic inflammatory disease. But I'm not too sure because I've had swabs and smears done and they have come back normal.

Please could anyone let me know if the have experienced anything like this with endometriosis?

Thanks

[AttilaTheMeerkat]

It could well be endometriosis that is the underlying cause here; I recognise many of those symptoms myself (I've seen rectal pain referred to javelin arse; that is also another possible indicator of endo). Also this all started when you were a teen (which is when my endometriosis started too).

Any pain that is cyclical in nature or gets worse up to and including menses should be checked out further to see if endometriosis is the cause. Its usually only diagnosed through a keyhole surgery op called a laparoscopy.

Ongoing irregular periods are often caused by hormonal imbalances; in this respect a condition called polycystic ovaries is a common culprit. The cause of your irregular periods should also be further investigated.

[AttilaTheMeerkat]

When do you next see a gynae specialist?. I think a further appointment should be made asap if there is not already one in the pipeline.

[Hope24]

Hi Attila,

Thank you so much for replying.
I should have mentioned that I have had my hormones tested for pcos and they are all normal. But I still seem to get cysts on my ovaries!

The strange thing is that if it was endometriosis, would it die down after my teens and then reappear now? It just seems a bit odd, although I guess anything is possible!

I have a follow up appointment with the gynaecologist to discuss that next steps in December. So I guess I'll just have to wait for that. She did mention a laparoscopy, which I think if im offered it I will go for it.

I guess I'm just fed up of not knowing what is causing my pain

[Hope24]

Oh and another symptom I have is painful sex. Although not every time, but when I have it, boy does it kill!

[mareish]

Almost exactly the same symptons as I have had. My symptoms were masked a little by the pill then when I had been off it for 3 years & not got pregnant with almost every pain you describe I went to my doctor who immediately refered me to a gynae. I had a laproscopy to diagnose, then another later with an Endo specialist to laser the contusions, it changed my life! Make sure you keep a detailed diary of your cycle with pains, changes etc as this made a big difference in how I explained what was happening. Meanwhile make sure you ask your doctor for as much pain medication as you need.

[Tigerstar123]

Sorry to hear you're in pain hope. You do sound like you may have endo.
Attila, javelin arse, I'll have to remember that one. It describes the bottom pain perfectly!
I just wanted to say that the 'gold standard' for diagnosing endo is a laproscopy. I unfortunately was sent for a whole manner of tests (passed from pillar to post) before eventually being referred for a laproscopy.
Agree with mareish-ask for the pain meds you need. I was prescribed tramadol to help (but it made me a bit )!
Hope you get a diagnosis soon op. Sending hugs

[CannotEvenDeal]

Clicked on this thread by chance and I recognise all of these symptoms. Only ttc since August but definitely something to look into.

Thank you OP and everyone who posted. A real eye-opener.

[loveyogalovelife]

Good luck - definitely keep a diary and have a laparoscopy. I am 43 and in agony every month, throwing up and sometimes fainting. 2 laparoscopies but no sign of anything wrong so it's diagnosed as primary dysmenorrhea - i.e. No underlying cause. Now I can feel mild pain all month round, feels like it may be in my ovaries and Fallopian tubes - but they have no idea why - and I'm so frustrated. It does sound as though we have different symptoms but just in case it helps... Ask your doc about tranexamic acid and mefenamic acid taken together for the pain if you are desperate, but also see if you can get vitamin and mineral testing as improving diet and taking good quality supplements have helped me somewhat and natural always better first option. Good luck. X

[Hope24]

Thanks so much for your replies guys

I have been keeping a symptom diary since my last appointment, however I can't seem to be find a pattern. The sharp pain comes and goes when it wants and there's always a lingering dull ache

Could I just ask, for those of you who have had a laparoscopy, did it help? And also did you first have a diagnostic lap and treatment lap later or both at the same time?

Also thanks for the suggestions about the painkillers. Will definitely ask my doctor about those.

Lots of hugs

[AttilaTheMeerkat]

Hi Hope,

Deep pain during sex is also seen with endometriosis.

In my case endometriosis has been ongoing since starting periods at 14 with varying degrees of severity.

Was going to ask what hormone levels were tested for PCOS and on which days; if these are done on the wrong days then the test result is meaningless. You should have had a day 2 testing comparing LH with FSH; there is often an imbalance of LH to FSH where PCOS is concerned.

I would be asking them more about the cysts on the ovaries; if this is PCOS these are really cystic follicles than come and go (that is why they are not always seen at internal ultrasound).

I would clarify with the gynae about the lap op if it is proposed; what you do not want is simply a diagnostic lap. If endo is there it needs to be treated. You do not want any more surgery either than is absolutely necessary.

I would also confirm with the gynae that you will be given a follow up appointment post your lap a week or so later to discuss the findings. You really do not want them talking to you about the op whilst you are in the recovery room; apart from anything else it is bad practice.

any other questions just ask.

[Tigerstar123]

In regards to the lap, I was told that it would be both, so diagnostic, but depending on where the endo was, they would do their best to treat it there and then.
I had the op and was told that I have stage iv, (organs fused together ) but she was able to remove what she could at the time. The lap worked wonders for me, but only because I become pregnant 3 weeks after the op (after a mmc and trying to conceive for 14 months).
However, after having baby, I'm still in pain so I'm back under the consultant.
Agree completely with Attila they need to speak to you properly about what they find. I was told info when I was in the recovery room after coming round from a GA . I did ask the surgeon if she'd speak to me and my dh when I was on the ward, she said she would, but she went home!
Living with endo is tough so hugs to all of you guys on this post x

[mareish]

When I had the diagnostic lap they said they would treat as well but I had more stuck together than they could treat so they cleaned up a cyst & broke up a couple of fusions then packed me off to a consultant in Oxford that specialised in endo.
When it came to my second op I asked the surgeon on the day to please give me all the details of what they did & they found I had moderate endo & all the symptoms made sense when they gave me the details. I did get more than I bargained for as when I saw the surgeons the next day one of them handed me a DVD & it was a recording from the camera inside my abdomen!!! It is fascinating!
I don't know where you are in the country but there is a big research project going on at the Oxford's John Radcliffe to identify possible biomarkers in women with endo. The study is designed to see if blood, urine or saliva tests could indicate if a woman has endo. This disease is being treated very seriously & the hope is that in the future women won't need to rely on surgery to diagnose.
Meanwhile have a look at a support website like Endometriosis UK //www.endometriosis-uk.org, if you haven't found it already, I found a lot of information on there on all sorts of aspects. I particularly gained a lot from the forum as there is a lot of support there. Keep us posted if you can

[mareish]

I also meant to say that I have been told by one of my consultants that there seems to be no correlation of endo severity & pain. He said one woman could have a small amount of disease but immense pain yet another woman could have extensive & severe disease but little pain, that's why they like to know about all of your symptoms. Eventually, like you, I had aching, heavy pain all round my cycle but had much more intense pains at the time of my period. At one point I refused to go along certain roads in the car because the bumping about caused me grief! It can get better, don't read too much about the the women who've had the scary journeys as there are lots more of the positive stories out there!

[einalem1984]

The symptoms sound like it could be endo. Particularly the pelvic pain and pain in the bum. I tried to conceive for 3 years until found out had endo and in the end managed to conceive after laparoscopic surgery and IVF. Don't be afraid to keep going back to your gp don't let them fob you off until you get answers about why you're not conceiving