I'm new to this, and just need some advice! This is my story! Expected endo

I'm aged 21 and I've been suffering now for 6 years, I massively respect those who have been suffering for longer!

This is my story

At aged 16 I noticed my first symptom it was pelvic and abdominal pain,

The doctor straight away put it down to stomach acid, so I was on operzole tablets, which did nothing.

I then went back as I was in agony with my abdominal and pelvic pain! Even my lower back started to hurt!

They said to me perhaps with you being a teenager it's just pain with periods and your periods are normally heavy at that age.

They booked me in for a ultra sound scan.

Nothing showed.

I left going the doctors for a while as I felt it must be my periods.

Still having my pelvic, abdominal and back pain, I then started to notice bleeding during sex, and pain.

I then visited my doctor as I knew this wasn't right, they sent me off to the clinic to be tested for STI'S the swabs all came back as normal.

I then visited again as I noticed I had a water infection, this was probably my 5th water infection! I've suffered with them since the age of 14.

When I visited this time I was referred to see a gynaecologist she had to do more swabs, and a smear, she found that I had an erosion, so I then had to be booked in for Cryosurgery, The cryosurgery wasn't a pleasant experience, especially been the age of 17

A couple of weeks later I then visited a different gynaecologist again after my cryosurgery, she told me that they shouldn't of really done that procedure on a young cervix, and she told me my erosion was still there, she advised me to wear loose clothing, and use non fragranced shower gels. I was never seen again after that!

A few months later I was still having pains in my abdomen, back and pelvic area, but they were getting unbearable it felt as if someone was squeezing my insides really tight! Work got tough as no one believed how I felt, and thought I was putting it on!

I then returned to the doctors with another water infection, turns out it was a kidney infection, they then asked more about my symptoms so they booked my In for a transvaginal scan, and ultrasound scan, I went for the scan, got my results and found out my kidneys are conjoined together, They were shocked it was never picked up in my previous scan as your born with a horseshoe kidney! I then thought I had my answer! I thought that's why I've been feeling this way but how wrong was I!

After been referred to a urologist he was very happy with my kidneys how they were functioning. You can have a healthy life with a horseshoe kidney, your just more prone to getting infections.

After seeing my urologist I was still having the pelvic, abdominal and back pain, I also noticed stiffness in my shoulder.the pain got so bad I struggled to sleep, I had to sleep with a pillow underneath my side, I then noticed I was sick quite often for no reason, I didn't have a bug or anything! It was just very random!

Still months on I didn't know what to do, I didn't think the doctors could do anymore for me, I felt uncomfortable going back and I felt like they were saying "oh what's up with her this time" I felt like they were fed up of seeing me! I then realised I was suffering with anxiety.

After months I then returned back to the doctors to say how fed up I was of feeling like crap, I was always tired I had no energy, my pelvic pain was still as bad, me and my boyfriend were constantly arguing about sex, as our sex life has gone down hill, it's far to painful! And it's horrible because my boyfriend doesn't understand how I feel! It's making me feel so low about myself!

I told the doctor all this, they adviced to use different lubricants, different positions! We had already tried that! So they sent my home with nothing!

A few months later I found out I had depression, I didn't want to get out of bed in a morning, I'd just cry and don't know why, even getting in the shower was effort! I felt drained and I don't know why! I'm am now a 20 year old and I feel like a pensioner!

I found my depression got better I listened to happy music, and joined the gym! I still had low days but it was nowhere near as bad as before.

I still had all my symptoms from before my

- pelvic pain

-abdominal pain

-back and shoulder pain

-depression/anxiety

-pain during sex/ relationship struggles

But I'd had them that long now I almost felt immune to them!

Within the last couple of months I then started to notice my bowel wasn't normal, every time I went to the toilet it was either diarrhoea or I was constipated, I expireced pain during bowel movements, sometimes it would be embarrassing as i would be fine all day then I'd need to run urgently to the bathroom!

So another trip to the doctors with my bowels, they did a stall sample but nothing showed and they didn't treat me for anything else, they were still concerned with my other symptoms, so they made another appointment to have some more swabs because she was concerned about my pain during sex!

I then went in the week after and just broke down I told her how fed up I am! It's been going on for too long! So she was asking for all my symptoms, I told her, she then referred me to a gynaecologist, my doctor said it could be endometriosis or vaginosis!

I was so excited to see a gynaecologist!

I saw my gynaecologist and she was great, she went over everything with me! And after doing all the examinations! She ruled out vaginosis! And said we're left with endometriosis, she said that's what it sounds like to her,

So I'm now on the waiting list for my laparoscopy.

Can anyone relate to anything I've been through who's got endometriosis ?

Can anyone recommend anything to help with IBS ?

And Can anyone help with advice on a good sex life with endometriosis as it as effecting me and my boyfriend ?

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8 Replies

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  • I have had endometriosis for 20 years but like you in the first few years suffered with the pain and been told by Drs it's just my periods. After being diagnosed I have had 9 laparoscopies as the endometriosis kept coming back. Yes sex is painful but have you tried the depo injection I found that helped with the pain and the bleeding. But totally understand how you feel as it's so painful and does effect your day to day life. Hope you do get better after your laproscopy but do try the depo injections they may help.

  • Thankyou for the advice! Gosh 20 years that's such a long time! And I will read up on the depo injection! Thankyou for telling me about that! I've not heard of that!

  • It's used for contraception you have one injection every 12 weeks has stopped working for me as my endometriosis got a lot worse but do discuss with the consultant may work for you.

  • megcorden, PLEASE update when you get answers! Different age/timeline, but this sounds so much like what I've been struggling with. I have yet to get any answers, but I'll be seeing a gynaecologist this week. Hopefully he'll be willing to book me in for laparoscopy in hopes of finding out whether I have endometriosis!

  • Good I'm glad your seeing a specialist! This is the 4th one I've seen, and this is the first time they've mentioned a laparoscopy, I'd push for it I really would! Because they try and rule everything out before hand, which realistically the first symptom of endometriosis is abdominal/pelvic pain, which could be anything, so 100% tell them everything! And ask them what they think about a laparoscopy. Please update :)

  • I'm 21 too and in the exact same position as you! I haven't been diagnosed yet but have had so many other tests to rule other things out. I saw a gynaecologist who said they didn't think I needed to have a laparoscopy yet as my pain isn't constantly severe. However, I can't bare spending every day in discomfort so I'm going to go back to the doctors and demand to be referred to a specialist centre! Are you going to have a laparoscopy? x

  • I would really push for one! This is the 4th gynaecologist I've seen and this is the first time they have mentioned a laparoscopy! Just tell them you think it could be endometriosis, and tell them the symptoms your having! I hope you get sorted and yes I'm gonna have a laparoscopy, keep me updated x

  • Hi, sorry to hear you have been having to fight to get answers, it is far too common for people with endo. I hope you get some answers after you lap. I had to fight my GP/hospital to get a lap and had countless other tests - ultrasounds/colonoscopy/endoscopy etc. Eventually I had a lap and was referred to a specialist centre due to the extent and location of my endo.

    In relation to IBS, I had problems with my bowel as that is where some of my endo was - it has since been removed during surgery. I drank aloe vera juice, took peppermint capsules and avoided trigger foods - for me it was chocolate/fried food/cheese (anything nice lol).

    I also had problems with painful intercourse. Honestly, this did not resolve until I had, had surgery, the endo was removed and my organs were unstuck. We made use of foreplay and I did find some positions more comfortable than others.

    D x

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