Endometriosis?

[Daisyxxchainxx]

I'm 31 and have had two kids in the last 5 years. Before kids my periods were fine.

In between baby 1&2 I noticed twinges around my left ovary. Always the same place. Like a mild pulse. Told drs and scans are clear.

After baby number two periods became the devil. Heavy. Clotty. Period pains on day 1-2. Lasting 7 days.

I'm anemic and vitamin d deficient.

I'm always spotting. I get cramps around ovulation. Sometimes i feel random mild heavy sensations in my womb when I sit down.

Scan showed no cysts and one tiny fibroid.

I get random nausea alot! I feel weak alot. I'm fatigued alot. I've kept a diary and I've felt symptoms on 18 days out of 31 days. Some I'm just abit yucky and tired. Others im in bed sickly, weak and miserable.

I took the mini pill for one month and my symptoms have been worse since stopping them 9 weeks ago .

I also get tailbone pain for no obvious reason.

Tonight everything I read points towards endometriosis. I don't get agonising pain but I get alot of symptoms.

Any advice? Dr is doing bloods to check my ovaries and I have no idea what she means. She's also suggesting I'll be referred to gynocology. So the balls rolling.

What's the outlook if it's endometriosis? Will I be fatigued and sick for life?

Hi, I have been the same as everything you have decribed except tailbone pain. I had bloods done few weeks back all clear then a scan on Friday witch showed cysts on ovaries. Said it looks like pcos and need more bloods done to confim.

I have severe tailbone pain, I’ve been diagnosed with endometriosis following a laparoscopy, the first signs of endo for me were heavy painful periods and tailbone pain.

My surgeon found endometriosis tissue growing through my first c sections internal scaring when they cut me open for my second c section. They removed what they could there and then.

I'm hopefully (it's been postponed twice now and I've been waiting nearly a year...) seeing a specialist on Thursday because ever since that c section I have been in agonising pain for at least 20 days a month (struggle to even lift my 11 month old), I can bleed through tampons in less than 30 minutes on my worst days, have extreme ovulation pain and bleeding lasts for up to 14 days. I even had horrific period pain when I was breastfeeding which started every 28 days in line with my cycle.

I've struggled with extremely heavy periods, huge clots and chronic pain (mostly on my left side) since I was 13 and I've had countless doctors appointments prior to my pregnancies where the doctors brushed it off as "just period pains" and even "teenage hysterics over a perfectly normal bodily function"..

I'm sure I've been suffering with endometriosis for over a decade. I cried with hope when my current GP made the referral for me!

Thanks everyone. Interesting as it's presenting itself differently in all of you.

I just want to get to the bottom of it.

In shattered this afternoon. It makes no sense

@Elsiebear90 does your feel a mixture of bruised and sore?

Im the same wake up tired and go to bed tired. Rang doctors today for scan results and receptionist doctors want to see me tomorrow to discuss them so alittle worried. Hope you get to the bottom of it daisyxxchainxx

This is interesting for me because I am having a lot of pain below my waist, been worse the last 3 months. As a pp said, i feel bruised, swollen and sore.
I feel like I need a wee all the time, but it just dribbles out, been to the Dr who has done blood tests, urine tests and ultrasound scans. No sign of infection.
I will ask about possible endometriosis. The dr initially said it could be diverticulitis, as bowel movement were also painful. I am becoming quite down about it, so sympathy to everyone here

I've had pain off and on since November - starting with what I thought was a UTI but tests came back negative. I've had weeks of respite off and on but it's most definitely on at the moment.

Symptoms sound somewhat similar to what you and others have mentioned. Lower pelvic pain - including burning pain low centre, and sharp pains slightly higher and occasionally to the sides, it started (as mentioned as above) as needing the loo a lot, but it seems to have morphed into pain rather than urgency now. It just all feels so inflamed.

In addition, my cycle has jumped from about 33 days to 25 days and have had agonising pain during my period (to the point I've been doubled up in agony and on the verge of calling 111). I was diagnosed with adenomyosis years ago but have never had symptoms as such. Wondering whether it's morphed into endometriosis.

Had a load of bloods done last week and am seeing the GP again on Thursday for results and some swabs done. She mentioned plenty of things it may be but also said she is going to check for ovarian cancer markers (ie. CA125 blood test), which has put the fear of god in me.

Sorry to hear you're all having to put up with such nasty symptoms too.

I phoned doctors today at 9.30am as told to do on Monday when i rang as dr want to discuss the reslts with me but all appoints for today where all full so have to try in the morning again. My pain is mainly on lower left side first two pays on period are so so painful that im afraid of it coming every month. Also durning period going to the toliet is soo painful. Hope youse get to the bottom of the problem youse are having

I've had ovary/lower abdomen pain, too, on and off for the past year. Had an ultrasound of all the organs and a colonoscopy, both were clear. They said maybe IBS.

This year I've been feeling really unwell every month and it seems to be coinciding with my period:

Brain fog
Fatigue
Cold sweats
Palpitations
Diarrhoea/constipation
Feeling so weak
Insomnia

Had wondered about endometriosis but I don't really get period pain, just the pain to the left and right of the abdomen.

GP said stress and anxiety when I rang...things are a lot better now but period is due and I feel terrible.

So posting to follow

I had endometriosis diagnosed by lap around a decade ago. It started with pains at other times of the month, and the tailbone pain, and pains in side. The worst, and most recent symptom, is very painful urination, and urinary urgency during, and just before and after, my period.

It was suggested I have another laparoscopy.

The period pain itself is no worse than it ever was. Pain also after bowel movements, during period, forgot to add.

Thank you for sharing your stories everyone. I went back to the Dr today, who said I have an abscess behind my c section scar, she gave me a cream , but no antibiotics. I again complained about the pain, worse around my period, said it was affecting so many aspects of daily life. I asked could it be endometriosis or interstitial cystitis? She is now considering if a labroscopy? Is the next step.

Thanks for sharing @EmpressMaudie I’ve been recently last 5 months since periods started post breastfeeding having the most horrendous pain where I can end up screaming in my back passage on the first day of my period and then the rest of the month I’m fine Dr Google comes back to endometriosis. Is your pain like this?

I'm so anxious for my appointment with the consultant tomorrow after years of agony it affecting my every day life I feel like there's so much pressure tomorrow to explain how bad it really is and for them to consider it more than just "bad period pain"

Hey ladies glad I’ve seen this thread.
I have a mirena coil in which was due out Oct 19.
I couldn’t get an appt until March this year which was cancelled due to the covid19.

For around a week now, I’ve been feeling like I have a UTI, pain in abdomen, groin, pelvic pain, pain in sides and around lower back.
And feeling slightly nauseous. Sometimes the pain makes me feel winded slightly.
I have been to the doctor and she couldn’t find an infection, nor anything to indicate kidney stone etc.
She did swabs for pelvic infection which I need to call up for results.
Any ideas what this could be caused by?

Sympathy and. 💐🤗to all of you I’m living with mild bleeding bad period pains every two days, I had coil put in in January. Keeping diary since 3rd of May, when I next see dr I’ll be showing this.

Well i got my results back and said it def looks like pcos and have to get more bloods to check hormones. But all my signs point towards endometriosis. I dont alot of the the things that come with pcos.

I’m so glad I saw this thread. I’ve been having blood-filled boils along my episiotomy scar for the last few months. They feel like a boil, but always pop on their own and only what looks like period blood and clots come out. They’ve only happened since I stopped breastfeeding by little boy (about 5 months ago now) but I don’t know if they’re related to periods because I’ve been on the mini pill for months and haven’t had a period since before I got pregnant.
Always have lower back pain just before one starts up and lots of trapped wind type pain. Does this sound like endo in my scar? Can’t get a doctors appointment for months, because they merged 5 surgeries just before lockdown but I’m going to keep phoning and see if any become available.

I dont know Ladybadger, but these boils sound awful. Are they bad enough to go to A & E?
Was seen by another dr who said possibly the endometriosis could be causing my c section scar to become inflamed. But this is an years old scar, although the hard lump on it has also been there years.
Your scar sounds quite new, so could it be a recurring infection?

They’re not boils as such, there’s no pus and only blood comes out. And not painful, just annoying that I have to wear a sanitary pad or panty liner when they come up. My scar (and my little one) is 14 months old now.

I was referred to an endometriosis specialist dr and today he has diagnosed severe endometriosis. There is a large lump of it on my c section scar and a smaller one further along the scar. He was able to diagnose this by ultrasound and physical examination. He also could see it in my vagina, right at the back. And another lump of it in my stomach. He said we could try a progesterone pill to try to regulate my hormones which should ease the symptoms. If no improvement after 3 or 4 months, he would consider surgery.

@efeslight I had an ultrasound and an internal scan this week too, yet to see consultant about scan but the doctor said they think I have endometriosis 6 fibroids 2 of which have calcified and pushing against my rectum causing pain am yet to see the treatment needed. I also had a csection and didn’t have this pain before this birth

Can i ask whatkind of internal scan it was? An internal/vaginal ultrasound or something different? The dr showed me these dark patches on screen, said it was easy for him to see on ultrasound because he knows exactly what to look for. Feeling relief today.

Calcified fibroids sound scary