Is this endo

Hi. This is the first time I have posted and in need of some advice. I'm 33 years old and Have 4 lovely children. I started periods at 12 and always had heavy periods. I had my 1st baby at 19 and inbetween pregnancys always had the copper coil so guessed my heavy bleading was from this. I experienced pain from the beginning sometimes bad I would have a day off school.

During the last 2-3 years the pain has been getting a lot worse. I have lots of pain after intercourse which can last upto 3 days and when I think back I have had pain with sex for a long time but never thought anything of it. I have many other symptoms and every month they seem to get worse. I have bloating (mainly before period), brown blood before period, low back ache, pains down left leg and in knee, stitch type pain when ovulating (mainly left) Stomach cramps most of the time but unbearable week after period. Feeling low/depressed (have had this for many years). Feeling tired. Blood in stools sometimes. Plus many more symptoms. My aunt has always had bad periods and spends a week in bed every month due to pains.

I have been to gyne and they done sti tests. Bloods ect all clear. I have had blood in urine a few times when checked at docs but just told this is normal!! I had an ultrasound last year and they said there was chance I had a popped cyst and I would feel better soon. but just keep feeling worse :( Was told to get mirena which was fitted in March. My bleeding has slowed down ( just spotting a couple of days a month) but the pain is still there and worse then before. I was told they don't think it's endo coz I have 4 children and I'm 33!! Not sure if this is true. I know endo can cause infertility but have also heard of people having 3+ children with this. The day I saw gyne was a 'good' day and I had less pain then normal and they didnt seem to take me seriously just think I have bad period pain.

I was told to wait 6 months for check app ( my next app next month) they said I can have a camera operation to check but I'm really worried (haven't been under anaesthetic since being a child). I'm really scared they won't take me seriously at next app and won't help

Some days I'm ok and can cope with pain and other days I'm curled up and just want to scream. I just want to know what this is and why I feel so bad. My husband is really supportive and gets upset when no one wants to help. Sorry for the long message just want to talk to others who understand how I'm feeling. Any advice would b great

Many thanks Claire

5 Replies

  • Hi hun.

    Sorry to hear about your on going pain you are experiencing.

    I'm 33 and I have 3 beautiful children, I have recently been diagnosed with Endometriosis and Adenomyosis.

    I have like yourself had heavy and painful period pretty much from the start, I would have heavy bleeding and alot of pain. I was Put on the pill which helped for a short Time and then bleeding was still heavy I got hopitalized a few times due to the bleeding they told me clotting was on the slow side but just to avoid asprin and that was pretty much it and to take mefanamic acid to reduce bleeding.

    I had my eldest son at 20 and then there was 2 years between my eldest and second child and then 18 months between him and my youngest. So I had around 6 years where I was pregnant or had a young child.

    My problems got worse gradually over last few years, I was told by quite a few Dr's that I had "bad periods " and to get on with it basically. So I stopped going to Dr and just dealt with it like I was told.

    My pain had got really bad nearly two years ago. I had a lot of appointments with different Dr's who told me that I had pulled a muscle, has ibs and all sorts. I had chronic pelvic pain and pain down my leg. I eventually got to see a good Dr who said straight away that she thought I had endo from my symptoms and got me a referal to gynaecology and when I saw them they arranged a laparoscopy, I was very scared like you I had never had a anesthetic, but to be honest it was alot better than I imagined, yes you will be in pain after but in my opinion it was nowhere as bad as the pain I am enduring on a daily basis.

    I got my diagnosis of eendometriosis but I also have adenomyosis so unfortunately I am still in the same pain because of the adenomyosis as the only cure for that is a hysterectomy. Adenomyosis is more common in women who have had children. But the only way they can see if you have either hun is if they have a look. It sounds like it is effecting your life so I would definately say push for the laparoscopy because it's the only way you will know 100%.

    I hope this helps

    Jo xx

  • Hi jo

    Thanks so much for your reply. I hope you are well and not in too much pain. It's really nice to be able to talk to others who know what I'm feeling like

    After reading your post it sounds just like me. I will push to have the op when I go next month just hope they listen to me and don't just fob me off.

    I was really bad yesterday and just in bed all day I now feel the same and find it difficult to do anything. It's really hard when u have children and u feel so bad all the time

    Claire xx

  • Hi hun.

    That's alright I have found this site such a help since my diagnosis to be able to ask other people if they are experiencing what I am, and it gives me peace of mind.

    I can completely relate with the symptoms you have described and I think I was lucky to see a good Gp who put all the pieces together, a lot of ladies in here have had to really push for there referal, I just think the Dr I saw realised I was in so much pain and needed help. Don't let them fob you off hun, push for the referal and if they still refuse tell them you are going to speak to management and make a complaint.

    I really hope you start getting some answers as to what is going on. I agree with you completely, I feel like I am letting my children and partner down, I experience crippling pain daily to the point I'm now living on morphine which makes me feel sleepy and moody and I just want to be a good mum and partner again.

    If you ever want to talk just message hun xx

  • Hi Claire

    You have been given a lot of the bad advice that many young women are - excuses by doctors along the way as to how you can't have endo rather than just dealing with it and finding out. You can have it from the moment periods start and many girls do. Pregnancy itself will have a protective effect as the oestrogen that drives endo takes a back seat during pregnancy so would usually halt its progression but it will return after. Also, whilst infertility can often be implicated in endo, many women have children easily, especially when young, and this depends on many things such as location of endo, length of cycles, ovarian reserve, age and individual immune/endocrine issues. The most common areas for endo are the ovaries, tubes and back of the uterus then the next is a place called the Pouch of Douglas, a deep hollow behind the cervix which can involve the bowel. Typical signs of this would be pain on sex and left pain often involving the leg. This sort of endo should be dealt with in a specialist centre as it is often missed in general gynaecology and I would recommended you ask for a referral. If you do have a lap in general gynaecology you should specify that you don't want them to touch anything complex as you would want referring to a centre for that, so it makes sense to get a referral straight to a centre. There will usually be a wait but in the long term the outcome should be better.

    Click on my name and read my first post on endo and the one on pouch of douglas endo to see what you identify with and the one on finding a specialist. x

  • Hi

    Many thanks for your reply. Thanks for some great advice. It's so difficult to find people to talk to who know how I feel. When I go to dr they just tell me to take pain killers and get in with it. I sometimes feel ok and just have slight cramps so people just think I'm being over the top but other days I'm in agony and just want to curl up.

    I have read your posts and I seem to relate to a lot of the pouch of Douglas symptoms. I have pain with intercourse and mostly on my left (stomach. Leg. Hip. Buttock. Knee) My pain can vary from cramps. Aches. Numbness. Stitch type. Stabbing. Pulling and get worse as my period stops.

    I also feel a type of pulling/tugging on my left like something is stuck and needs to be unstuck between the bottom of my rib and my hip. This is worse when I lay on my right and my stomach falls towards bed (if u know what I mean)

    I will try to see a specialist I'm just really worried about the op and if it will make things worse


You may also like...