Talk to me about endometriosis and the pain

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I’ve talked on here about my miscarriages before, and they are once again considering I have endo but it’s being given more serious consideration than before. I first went to the GP with painful periods when I was 14 and by 16 I was being given tramadol and codeine to deal with it.

What is the pain like for anyone who has it? Before I had my son, it was agonising. I’ve never felt pain like it (my cesarean has nothing on that) and it used to make me miss five days of school and then college.

However after I’ve had my son, the pain went. My periods are light and painless.

Instead I’ve got constant dull pelvic pain, mainly on my left, that turns excruciating mid cycle. I was rushed to a&e a few months ago with what they thought was appendicitis but no, was mid cycle pain. I couldn’t talk and was doubled over unable to stand. That’s not normal surely.

Scans have shown what looks like a hydrosalpinx on the left and I’ve never had PID, chlamydia or anything like that. So I’ve been told that also indicates endo.

Has anyone with endo had this? Anyone had this and it been something else? Advise appreciated, I’m really worried. Thank you.

SE I’m glad you had your DC and I’m so sorry for your losses. I’ve had two missed miscarriages and two chemicals. It’s shit. I cried yesterday because I saw a statue of a baby with wings.

Although atm I’m more angry that I’ve been complaining of these issues for years and no one took me seriously. I know it’s the case for a lot of women and it’s not fair.

And yes it is, everyone my sons age seems to have siblings and people ask us if we’re going to have other kids and it’s so upsetting.

My endo symptoms started at 12, finally diagnosed at 22 after around 30 emergency hospital admissions for Pain that had me losing consciousness, and even seizures on a couple of occasions. Back then my symptoms were very long and heavy periods with unspeakable pain, bowel cramps and diarrhoea every time I ate anything, shooting pains up my bum and a general dull aching pelvic pain every single day.

When I had my first diagnostic lap it was somehow clear (aka they spent less than ten minutes on me and there weren’t enough incisions to do the surgery properly) . Another at a different hospital a couple of years later once I’d graduated showed my bowels were twisted and stuck to themselves, one tube was stuck to them but there wasn’t that much visible disease. Then I got a referral to a specialist who does excision surgery.

I’ve had six laps, been on every hormone treatment available and been on morphine every day for over 13 years. I was very lucky to get pregnant quickly and easily and now have 17 month old twins.

My period since I stopped pumping have been agonising and I think I have adhesions on my bowel again as the bowel symptoms are back for The first time in over 10 years. The c section probably didnt help. Contemplating a hysterectomy now (I’m 35).

The problem with endo is the symptoms don’t always reflect the severity - you can have no pain and stage IV endo, or you can have hideous Pain and stage I endo.

Tammy I think we spoke before about our babies being early (one of your boys was poorly?)? Hi!

Sorry you also have this hell. Was the tube that was stuck damaged?

We get the sibling question a lot. DD is almost 5. We had problems conceiving her - male factor issues as well as (at that point my undiagnosed) endo. It’s very unlikely we’ll have another. It makes me sad. When we were struggling the first time I tried all sorts of excuses, some people were plain rude telling me things like ‘You ought to crack on’, ‘There’s never a good time’. Now I just say ‘We’d love another but we have fertility issues so it’s unlikely’. Far easier.

I’ve been tempted to say “I’ve had four miscarriages.” to shut people up before, but they don’t mean any harm so I usually just say we’re planning it later.

I was diagnosed with endo in my late 20s. Severe episodes of pain, heavy,heavy bleeding, bowel symptoms and referred pain all over abdomen. I had adhesions all over and lesions all over bowel and bladder. Bladder is very scarred so I used to have urine retention in second half of my cycle. I had hormone treatment and surgery which helped. I had multiple miscarriages but then had DS when I was 40.
After pregnancy I had a Mirena coil fitted and got my life back!
When it was at its worst my gyni prescribed anti inflammatory suppositories, they were probably the most effective painkillers if I could get them in before the pain intensified. I have spent many nights lying in in the bath in the dark trying to ride out the pain. The deep visceral pain made noise and light unbearable.
I have now reached the other end and despite my fear of the pain returning I am using estrogen patches alongside the Mirena coil as HRT and so far so good. I have welcomed the menopause and I was coping with mood swings and mild hot flushes but not with muscle pains and fatigue.
I have lived with endo for the last 30 yrs but it has never defined me. Few friends or family know the full extent of its effects but my long suffering DH has always been a rock. I was diagnosed early on in our relationship and I knew he was the ‘one’ when he told me he knew that I was worried we would be unable to have children and that we could always adopt.
Diagnosis is just the beginning, treatment difficult. There are some very good endo specialists around the country. Push for diagnosis but make sure your GP refers to a gyni who specialises or has an interest in endo.
There are a number of online forums that you may find helpful. I haven’t used them for a long time so no longer have the links.
It does sound like you have endo symptoms but you do need proper diagnosis.

Thank you everyone.

Unfortunately I’ve got pain today and it’s there pretty much constantly atm.

I’m seeing my gynaecologist on Tuesday, are there any specific things I should say to try to get a laparoscopy?

Sorry forgot to say that recurrent miscarriage appears to be very common with endo as is PCOs. I had secondary PCOs which means I have the hormonal imbalance but not clinical symptoms of PCOs. My gyni suspected that the hormone imbalance contributed to early miscarriage and my only successful pregnancy followed 12 months of treatment with Metformin. I know it is all anecdotal but you may find more information on endo sites.

I’ve bedn tested for PCOS and I don’t have it which surprised me.

Thank you so much for posting this as I'm sat on my sofa doing the Labour breathing exercises and everything I stand up I have to feel a gush of blood and have bagged up clots this morning.

I had endo removed from my bladder 3 months ago and a scan last week showed adhesion to my left ovary, bowel and adenomyosis so I gave to go for a scrape next month. It's driving me crazy! The pain is maddening isn't it? My 6 year old just did a running jump in to my stomach and I roared at her in pain I'm a loan parent of 3dcs and I feel terrible because I can't get off the sofa.

Before you see gyni write a list of all the symptoms you experience throughout your cycle. Try to put them in chronological order and rate the pain you feel. Note down the pain killers you have to take and estimate the amount of blood loss you have.
I remember one doctor telling me that women only lose about an egg cup of blood each month. I informed him that if he was talking ostrich egg cups that would be a fare estimate. I also suggested that I collect all the used tampons and towels I used in one month to let him see how much blood I lost.
Ask the gyni what experience they have with endo.

(The pain also seems to be causing terrible spelling, grammar and sentence structure, sorry!)

Tyrian it’s horrible isn’t it. Some days I feel like a bad parent because I can’t get out of bed. :(

Thank you will that’s really helpful.

Cats that’s right - he was growth restricted and spent his first few months in hospital. Still has an ongoing illness but he copes with it all very well (I wouldn’t be happy if someone was stabbing me in the foot 8 times a day but he’s a very happy boy somehow!). How’s your little one?

It seems my tube wasn’t damaged fortunately, but then it was freed by a very skilled surgeon so I’m sure that helped. The last lap before I got pregnant they did a dye test and both tubes appeared normal - I was extremely lucky.

I think after all you’ve been through it’s more than reasonable to say you want this to be fully investigated and a lap is really the only way to do that. You deserve some answers. Personally I would advise finding an endo specialist (it’s shocking to me how little most gynaes know when it’s the second most common gynae condition - it’s really unacceptable) to perform any surgery needed after the diagnostic laparoscopy. Ideally you’d see a specialist to do the diagnostic one in the first place as general gynaes can miss it if the presentation isn’t typical (as in my case). You have the right to be referred wherever you choose but it can be difficult to convince a GP of this before you have a diagnosis.

Tammy mine is doing well! He is very happy glad to hear your boys are okay too!

They think mine is damaged and may have to be removed. I will try to find a specialist - I stupidly thought all gyni docs would know about it

My mother suffered dreadfully with endo from the age of 14. She had various investigations and operations in her 20s and I remember her spending at least a week each month in bed writhing in agony - she was always ill in my childhood memories. Eventually she had a hysterectomy at 41, which alleviated most of the symptoms... until she started with horrendous stomach and bowel issues in her 50s. A scan showed a large mass so she was terrified it was cancer. She had a large portion of bowel removed and I remember her sobbing in frustration when she was told 'Well it's not cancerous but we don't know what it is'. Further testing showed it was endometriosis - still causing her problems all those years after the hysterectomy, because they left her ovaries in. She had to have injections to induce menopause in the end to get it finally sorted!

They told her it can be genetic, so I thank my lucky stars every day that I avoided it (so far, touch wood).

I remember one doctor telling me that women only lose about an egg cup of blood each month

This always used to make me laugh, as a teen and even now if I'm off the pill I was losing an egg cup of blood every hour. To the extent that it would flood two tampons and a sanitary towel though my clothes onto my chair at work if I didn't get up to use the bathroom every hour. An egg cup! I wish! It was easily a 330ml can of coke size amount across a few days.

I don’t have the typical bleeding most of you have experienced. My main symptoms are pain, fatigue and miscarriages.

Having heavy bleeding on top of that must be shitty. for you all

The last clot was 15cm long and I got really dizzy with the pain so I phoned out of hours GP and they are seeing me at, wait for it...11 PM! I have to wait another 8 hours. I feel so bad for the NHS and its staff!

I didn't know what else to do though because they pain has rendered me immobile, I can't stand up straight and I can't look after my DC's (poor DS1 who is 14 is playing Dad) so do you think I was okay to ask to see someone? I feel guilty now.

Of course you’re doing the right thing. I have toddler twins and during my periods it’s an actual nightmare. Hope they can help with some effective pain relief at least.

I just had a laproscopy and they found endometriosis with adhesions to my bowel. I used to get huge pain during my period and particularly when I had a bowel movement or passed gas. It was even worse doing that with a tampon in, so i just stopped using tampons. Then the pain started continuing outside the time window of my period, and that is when my gynae decided on the laproscopy. I have a mirena fitted now, which has helped for about 8 months, but the pain is starting to creep back. I think a hysterectomy may be in my future as I am lucky to have completed my family.

Sea I had a hysterectomy due to ovarian cysts and the extensive endo, I'd had all of my children and was 42 at the time, it made sense.

Best health decision I've ever made.

I sympathise OP, I'm currently 25 wks pregnant and bloody loving it! I used to sit at work just about getting through, dosed up to the max on painkillers and my back covered in those warming things just clock watching so I could come home to bed and have a good cry in the week before my period when the horrible dark brown sludge appeared. I've had 2 laparoscopies which helped.

I'll take pregnancy over endo pain and periods any day!