If you suffer from endometriosis what symptoms do you have?

[ImaHogg]

I have had gynae issues for years along with daily digestive issues (diagnosed with IBS and gerd). A couple of years ago my sister had suspected OC. She had suffered from years of pelvic pain and a large mass was then found on her ovary. Turned out to be endometriosis.
I keep reading that it often runs in families and although I don’t suffer the same kind of pain my sister has had, I have had years of gynae issues (very heavy periods, pain before period which runs down my legs and lower back, pain during ovulation, ovarian cysts including a couple of chocolate cysts and reoccurring uterine polyps) I am wondering if I too may have endometriosis?
If you have endometriosis do you suffer from lots of pain or do you have other symptoms?
I have a gynaecologist appointment (been on a year long waiting list!) and I want to ask if this may be a possibility.

Ok...I’ll run through my symptoms they got progressively worse over two decades.

Teen - severe painful periods that would wake me up, very heavy too. Pain in diaphragm would come and go (couldn’t breathe properly with it). Managed with pain relief. Dx IBS (hollow laugh).

20s - over counter pain relief didn’t help, continued to muddle through. Started to get pain with bowel movements during period.
Infertility. Fatigue. Nausea.

30s - back pain, sciatica (made worse due to pregnancies which I was very fortunate to have), urinary urgency.
By late 30s, extreme fatigue, became house bound from ovulation to end of periods due to pain/fatigue/nausea, I felt like I had the flu every month. Period lasted 11 days. Horrific pain passing bowel movement. Two miscarriages one with haemorrhage.

I had stage 4 endometriosis and adenomyosis. The endometriosis was everywhere including diaphragm, rectovaginal endometriosis, bladder and bowel plus many other locations.

It’s horrendous. Slowly coming out the other side.

Best of luck.

I was age 40 when I was finally diagnosed.
Age 10 I had my appendix out (specialist said this may have been caused by the start of endo)
Age 13 my periods started and from the start they were extremely heavy and I would feel sick and faint with the pain on a monthly basis. The school nurse knew me by name.
My lovely lady GP at the time put me on the pill for the pain.
Age 18 I was taken off the pill as it caused issues for people with a FH of breast cancer.
When I went to uni I noticed that I was in a lot more pain than my housemates.

In my 20s they continued to be really heavy.
Mid 20s the "IBS" started. Except it wasn't IBS. I had several bowel scans. The painful periods would get worse.
Age 28 my gallbladder was taken out. My specialist has since said this is common in endo sufferers.
The IBS got worse.
Age 30 we started to try for a baby.
It took 3 years and clomid medication. On my scans they could see a large mass to one side that they thought was a haematoma
When I delivered my daughter she became stuck and I had to have a c section. I then found out that due to the strain of trying to deliver... I had dislocated my pelvis.
Looking back the specialist thinks that it was a large fibroid on the scans.
Following my daughters birth I felt so much better. Loads of energy despite the pelvis.
When I was 34 it started back up again.
I spent 6 years going back and forth to the GP with stomach pain, What I thought was IBS and feeling exhausted and faint.
At the age of 38 a period started that lasted for 20 months. Constantly. I was sweltering hot and barely ate.
The GP refused to refer me instead saying it was the menopause. Age 40
I started bleeding from the bowel. They checked it in the surgery and the GP stated it must be a haemmoroid.
I was feeling more and more faint, bloated and hot. I also found that when I urinated it really hurt. When I was almost 41 I collapsed in work. I was taken to a and e where they found several large fibroids and they suspected there was endometriosis everywhere.
I had a laparoscopic examination a few months later and it was everywhere.
They then did surgery where they planned to remove it but they couldn't as it was all over my bowel.
I was due to have the next surgery in May 2019. By February 2020 I was in agony and had several months off work. We paid privately to have it done. By this point it was extremely extensive stage 4 and all over my bladder and bowel. There was a surgical accident to my bladder which was unavoidable as it was so extensive.
From August 2020 I can feel that it has grown back. I have been waiting for an urgent appointment since November.
I also still have my name down for NHS surgery since May 2019 as they kept me down.
Funding is shocking, awareness is shocking and the aftercare with medication and pain relief is awful.

@Buttybach your journey is similar to mine.. diagnosed age 39 - I had a big op to remove it all. Also feel some has grown back too.
I also have POTS and other linked conditions. Not good :(

I was just about to start my own thread when I saw this one, I'm currently waiting for a laparoscopy which I could be waiting 12 months for due to the backlog with covid.
I have been put on the pill and been told to take it continuously for 3 months then take a 4 day break or take a 4 day break if I get a break through bleed which is happening often.
The pill is taking away some of the pain but I can't have any pressure on my stomach even wearing high waisted jeans is painful but when I have to take a break the pain is just horrendous and seems to have got worse than before I started taking the pill.
My question for anyone who suffers from this is this my life? Take the pill until I reach menopause or be in this pain? Will the laparoscopy help with the pain and the fatigue as well?
I'm only 26 thankfully have two boys but the idea of going through this for the next 20+ years is unthinkable if I'm honest.

I've always wondered if I had endo and when I had my c section 2 years ago one surgeon said to the other that they thought I had it and they struggled to control my bleeding.

I've always had heavy 7-8 day periods with lots of pain, nausea, diarrhoea, bloating etc. before and during.

Stabbing pains (javelin arse) especially when passing stool during period.

Took 5 months to conceive although both me and partner were in our 20s.

I'm also wondering if I have endometriosis as this has been mentioned as a possibility by the nurse who did an ultrasound scan and my GP. I've also had heavy painful periods that were made better by being on the pill but I had to come off it. Since I have I'm so ill every month, I'm so heavy I'm bleeding through the heaviest tampons and pads within an hr. Even when I'm not on my period I had terrible pelvic pain especially when I exercise and I'm so tired all the time. I often don't get much notice when I need the loo and have to go really regularly At the moment in working from home but due back in the office in a few weeks and I'm dreading it. My symptoms have worsened so much in the last 18 months I don't know I'll manage getting into work every day especially at the wrong time off the month. Was referred for a gynaecologist appointment 3 months ago on a two week urgent referral and the appointments this week. Hoping for answers but reading these posts doesn't look lik it's going to happen. It should be a national scandal that so women are receiving such poor treatment for this condition, I feel for all these posters

I have a chocolate cyst so I get very painful periods with a lot of knee pain, I think I’ve got an adhesion near the nerve as the knee pain is awful. I’ve also got a history of polyps,

As I’ve got older I’ve started to vomit on the morning of my period for some cycles too.

As far as I know chocolate cysts are a form of Endo where endometrial tissues proliferate in the cyst:

My aunt had one and endo so she had a hysterectomy but that was the 80’s and we didn’t know the long term side effects back then.

@Buttybach I feel your pain....I was diagnosed at 37.... I have period pain since 14 but it got worse when I was 30. I firstly found heavy bleeding and severe pain. normal painkillers didn't work well. When I was 35 I started tp bleed inbetween two periods...The firts GP said it was IBS. Of course it wasn't....Had 1st surgery in 2019 and 2nd in Feb 2020 as well. The doctor asked me to take dienogest to prevent the endo from growing back. It did reduce some of the pain but it made me feel hot and can't sleep well. I just stopped taking it because we want a baby (I don't have kids). The worst thing is the pelvic pain came back only 1 month after stopping take the medicine....

Hello I hope you don't mind me posting on an older thread, but I've ready your response on this post and a lot of your symptoms are exactly what I am going through. I am 29 and just been diagnosed with endo via a laparoscopy 3 weeks ago. I hope you don't mind me asking, how was your ttc journey? I am worried I won't be able to concieve 😔

Hi @Ilismummy it took 3 year to conceive my first. That was starting in late 20s :( but we got there naturally in the end although I did have four rounds of failed ovulation induction. Conceived age 30.
had my second very fast as was much more fertile after the pregnancy. Conceived age 32.
third one took about 1.5 years and had two miscarriages along the way. Ended up baby aspirin in first trimester which seemed to do the trick.

one thing no one says is that Endo makes you v ill around ovulation which obvs isn’t great if you’re ttc I would try and track ovulation so you can keep trying at the right times.

best of luck!

Thank you for sharing it sounds like you’ve had quite some journey, I’m sorry for the losses you went through.
So happy you got your blessings♥️
We’ve been trying for almost a year now for our second, whilst we were waiting for a laparoscopy but no luck at all. I didn’t have any issues with my first, didn’t suffer with any of these issues then so it was almost too easy to conceive her. It all seemed to begin following my emergency c section.
During my lap they found my right side tube to be very damaged. Also had a lot of adhesions so they didn’t even attempt to try solve it and said I would need a bigger op. My left tube had dye run through it just fine though so I am slightly hopefully. I am now awaiting my follow up in which I believe they will refer me to the fertility clinic and also discuss the second op.
And gosh yes the symptoms are awful around ovulation. I get the worst pains on my right side and also get feverish with bad body aches. Will continue trying, I am hopeful.
Thank you again for sharing! ♥️