Main symptoms : Hello there. I'm new to the... - Endometriosis UK

Endometriosis UK

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Jadiemac88 profile image
10 Replies

Hello there. I'm new to the site and wanted to know more about the symptoms people experience. Are they the same for everyone. When is it time to see the doctor? Before now I had only heard of endometriosis but didn't really know what it was up until recently. I googled the symptoms I've been experiencing and that's when it popped up about endometriosis. I have always experienced very painful periods from the age of 13 but they have got worse the older I get. I have over the last 4-6 months noticed a dull ache in the lower right hand side of my tummy ( where I imagine your ovaries or appendix would be). This dull ache gets more painful the closer I get to my period. I then have really painful cramps for the first 2-3 days if my period which then settles down and the dull ache returns for upto 4 days after I've finished my period and then will flare up and down throughout the month. I've been to the docs 3 times about this pain in my side and my period pains as I have been sent home from work or not gone in because of it. My husband and I have been trying to conceive our 2nd child for the last 21 months as well. I've had hormone tests to show my levels are ok to conceive but they are hesitant to send me for more tests as we conceived our son naturally ( even though I was on the pill at the time). Does this sound like endometriosis or could it be that googling these symptoms has lead me down the wrong path. Just feel like I'm being fobbed off by the docs and just wanted to get reall opinions from reall people who do suffer with this.

Thank you for taking the time to read this. Any information good or bad is very much appreciated xxx

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Jadiemac88
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10 Replies
Tboag profile image
Tboag

Hi, if I was you I would ask your GP to refer you to a gyne doc, your symptoms sound similar to mine, I've been having bad periods for along time, and I've been having near on constant pain and aches in my pelvic area behind hips and groin and back, since August 14, prior to that it was coming and going and not so painful, I've been referred for a laporoscopy now to confirm endo or adenomyosis, as that's what my gyne doctor thinks it is, I've had numerous scans and tests and so far nothing as come up wrong. Xxxx good luck

Lucy26 profile image
Lucy26

Hi i have endo, I have a daughter who is now 3 and we have been trying to conceive for nearly two years, after 18 months and period pains getting worse I went to the doctors told them i thought it was endo got referred to gynae had a laparoscopy within 3 months and now going for Ivf after having the endo removed, I was right all along my doctor was amazing for believing me. If in your heart it doesn't feel right don't doubt yourself because it takes a while for all these appointment so push for it as you want another baby it could take months. Good luck x x

Dollar1414 profile image
Dollar1414

I think the symptoms vary greatly my only symptom was and still is pain during intercourse and I have confirmed endo that I have had removed, but I have seen some women who have a whole variety of symptoms, and each have a different degree of pain in different symptoms if that makes sense. It took three years for me to finally have a larascopy, I had to constantly keep going back and forth to the doctors , ask to be referred to a gynaecologist, you need to persist , living in this kind of pain Is neither fair or normal x hope you get a solution soon x

KTRV profile image
KTRV

Definitely agree that you have to be persistent. I had intermittent pain that started five years ago. After the third episode I started logging when it occurred and realised it was at end of period or around ovulation - definitely linked to hormone cycle. As the pain was intermittent I presented to my gp with my more irritating symptom which was stress incontinence which was also intermittent and occurred with my hormone cycle. I am a biology teacher and know enough to put two and two together to suspect Endo but I got told I needed to lose weight and do my pelvic floor exercises!

Eventually I had an episode of pain while I was at work. It had always been in the evenings before so I hadn't realised how debilitating it was. I had to find an empty room at school and lie down until the pain reduced enough for me to feel safe to drive home. I was lucky I wasn't in front of a class or teaching that afternoon! But it was enough to send me back to the doctor. I got an emergency appointment on a Saturday morning and saw a different gp in the practice who actually felt my abdomen (my gp never had bothered) and decided to refer me for a scan.

The scan showed cysts the size of kiwi fruit on both ovaries and I was referred to gynae. Two years ago had laparoscopic surgery to remove stage 4 cysts. Have had no pain since. My incontinence disappeared after surgery too. I felt vindicated.

In the last year the incontinence has gradually returned and is now bad enough that I have to wear pads all the time, just in case, but as I was not in pain I put up with it, until recently. I went back to the gp who referred me last time and actually cried when I described my symptoms - I hadn't realised how down I was, even though I'm not in pain. He was brilliant and just told me it wasn't normal, there's lots that can be done and that I shouldn't feel a fraud just because I'm not in pain. My referral to gynae came through within a week and I'm going next month. I can't tell you how relieved I am just to have been taken seriously.

So, in my long-winded way, I'm saying stay strong, go back to gp, see a different doctor in the practice if necessary, but ask/insist to be referred. You know your own body. Any pain or discomfort is not 'normal'. Normal, healthy bodies work properly and don't hurt (or leak!) There is good help out there and I hope you can get referred and get the specialist care you need. The relief is amazing when you find a healthcare professional who understands. Persevere!

Good luck x

Jadiemac88 profile image
Jadiemac88

Thank you so much for your replies. I feel more determind now to go to the doctors and talk about this. Each time I've been to see the doctor they've never felt my tummy just said I'm too stressed about trying for a baby. I went to the docs on Thursday and they said I may have a cyst so sending me for a scan but from reading the nhs website none of the symptoms match but nearly all on their page for endo do. Might be TMI for a Saturday morning but has anyone ever experienced bleeding after they've had a bowel movement? And the bleeding is not coming from the back it's defo the front? If you know what I mean. This only happens to me in the few days leading up to my period and no. Other time during the month. I really appreciate you all taking the time to reply to my post.

Thank you xxx

Jadiemac88 profile image
Jadiemac88

That's me come on this morning in absolute agony. Made it in to work and had a complete breakdown and was sent home. It's even making my husband upset because he can't do anything to help. Waiting for a duty doctor to phone me back. It cannot be normal to be in this much pain :'( xxxx

Cinnamon_Girlie profile image
Cinnamon_Girlie

Hello there! I'm new to this site too, but I just wanted to say that your symptoms are almost identical to mine, except that I get pain on the lower left. If that's any consolation! So far the doctor thinks it's IBS, but the symptoms do follow my menstrual cycle and only started when I stopped taking the pill. After having a really agonising period I'm going back to the docs on Monday. I do hope you find out what's going on. I feel guilty for going to the GP again, but I just know something's not right.

Jadiemac88 profile image
Jadiemac88

Hello, just a quick update. I've been referred for a scan and luckily for me my parents have offered to pay for me to go private so having it this Thursday. I'm so worried it's something else to the point it's making me sick. I haven't eaten since Friday. I'm trying to tell myself that these arnt new symptoms I've had th for years but can't help it xx

Dollar1414 profile image
Dollar1414

Try not to worry too much you will only stress yourself out of course it is a very worrying time, but hopefully you will get your answers soon , Goodluck x

Jadiemac88 profile image
Jadiemac88

Hello. Had my scan yesterday. Everything is clear. Now got to back to the gp to be referred to the hospital for further investigation. Thank you for your words of support xxx

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