I finally have my endo diagnosis

For as long as I can remember, I've had gynae problems!

I started my periods at the age of eleven. For the last 23 years, I seem to have had pains and issues that I thought were "normal" and I should just deal with. After all, I can't compare my pain with somebody else's, so how do I know what's right and what's wrong?!

In my twenties the pelvic pains started and my doctor referred me for a colonoscopy to check for IBS (a common mis-diagnosis I believe) and I was discharged with no findings. I thought the "put up and shut up" attitude was better if the doctors had found nothing, after all, they're the experts right! My advice to anyone knowing what I know now is this old cliché - you know your own body and you should keep pushing for an answer until you have it! Do not give up!

In my early thirties, I had a cervical erosion following post coital blood loss and was referred for a colposcopy treatment. I'm thankfully ok in that department now : ) At a similar time, I started developing constant pelvic pains coupled with stabbing twinges here and there; these have steadily worsened and have come to a head in the last couple of years.

Summer of 2015 after sexual intercourse, I had to ring NHS 111 because I felt so ill. The pain was so unbearable; I was losing the sight in my eyes and feeling like I was about to pass out, I would go from cold to hot sweats in a matter of seconds, I felt so nauseous. I also felt like my insides were going to fall out through my vagina and the unbelievable pressure I felt on my cervix was too much. The call handler told me to go to hospital immediately...to be honest, I think she thought I was in labour!

At the hospital, I was given pain relief and Buscopan to relieve the spasms. I had a FBC done. They tested for pregnancy - negative. I am still utterly shocked to this day that they did not do a US scan on me, but I'm no doctor! If my knowledge is correct, almost a third of all young females presenting with pelvic pain at an A&E department have ovarian cysts and complications can be life threatening! Later that day, I was transferred to a gynae ward for an internal examination and was later discharged with one of two diagnoses; PID or a ruptured ovarian cyst. Their thoughts were the latter since my white blood count was showing signs of fighting something off.

I had an US about 6 weeks later and this showed I had an ovarian cyst within my left ovary. For this reason and judging by my medical history, my follow up in the gynae department 6 weeks later still was laughable. I was told I had severe OV pains coupled with Mittelschmerz and functional ovarian cysts - nothing to worry about apparently. When I asked her why then did I get so much pressure pain on my cervix, she told me this was due to fluid loss at the time of the month! All the signs were there; pressure on my cervix, pain during intercourse, constant pelvic pain, pain during toilet time, losing old blood prior to my period yet I was still discharged from their care!

My consultant requested a routine follow up US 12 weeks later and this is when I feel like they finally started to take me seriously. The scan showed the ovarian cyst now measured 6.3 x 4.7 cms and contained echoes; blood I was told. Following this, I received a letter asking me to have blood tests to rule out cancer; not very tactfully done either...it was like, your cyst has grown and you should get your CA125, AFP and Beta HCG done to be on the safe side. My mind went in to overdrive; I thought my consultant was requestinig these tests because he knew something I didn't, he'd seen something on my US surely! With hindsight, I now know that this was an over-reaction and shows just how delicate this was now making me feel. No tests are fully conclusive and the Dr was simply ticking requirements off a list!

My next follow up was more of a being told what to do. I have two options, have an op / don't have an op - I opted for the operation. I wanted a laparoscopy and felt like I finally deserved to know what was going on inside my body.

I'm now one week passed operative laparoscopy and doing well. The operation took longer than expected as my cyst turned out to be an endemtrioma that had fused itself to my pelvic wall. The Dr also found endometriosis in other areas that were cauterised during the op. Stage 2, mid thirties and no children. He sent me away to make babies if we can!

What happens from here, I don't know. What I do know however is that I am glad I now have a name for what was making me feel so unwell and can work with the doctors and my body to try and find a way to manage the pain. If my husband and I have a baby, great. If we don't, then I'll be safe in the knowledge that we tried everything we could to make it happen and it just wasn't meant to be.

To anyone out there who knows there is a problem, but feels they're not being listened to, trust in yourself, trust that you know your body and if you want a second opionion, go and get one!

Love K x

5 Replies

  • Hello,

    I just read your post and had to reply. You are clearly a really strong woman with a great attitude. Your perseverance has paid off. I am in a similar situation to you. I hadid been backwards and forwards to the doctor about pelvic pain and bowel problems. I had a colonoscopy.....no problem ect. Finally I had a laparoscopy 3 years ago and the gyne said all looks healthy just a little bit of endometriosis. I went on my merry way believing all was well. Alarm bells should have rang, but I was relieved to hear all was good. I was told I had IBS. I then had a 2 day stint in hospital after the worst pelvic pains ever and throwing up. I had raised white blood count, but a scan showed nothing. We are now trying for a baby and nothing is happening. I then started with a burning back pain which brought me back to the GP. I was told muscle or nerve pain. I went back for a second time and told them my concerns about not getting pregnant and the endometriosis mentioned after the lap. A month later and they are referring me gyne. I am gutted to be back here again and going through more tests.

    I get really bad pelvic pain a week before my period, heavy periods, backache, constipation and diarrhea. Is that similarto you.

    From a very worried 30 year old x

  • spanna10 Thank you for taking the time to read my post. It is such a compliment to be called a strong woman : )

    I'm sorry to hear you find yourself in a similar situation to me as I know how frustrating and painful it can be.

    Can I ask? When you were told you had a little bit of endo, were you not given a treatment plan? My doc was adamant that he would give me 6 months TTC at the most before he does further tests on me. He gave me the option of this or starting hormone treatment immediately. Endo is a progressive disease so they should be supporting you in some way - I am glad to hear you are going back for further investigation.

    How long have you been TTC if you don't mind me asking? People with mild to moderate endo should not have any problems conceiving, but you should still bear in mind that fertile couples don't always catch on immediately. The stats I have read are as follows: Of 100 couples, 20 will conceive within one month, 70 will conceive within six months, 85 will conceive within one year, 90 will conceive within 18 months and 95 will conceive within two years. Please do not despair. It is easy to get obsessed with TTC and that will only make things worse for you....stress and your body do not mix well! Relax, have as much sex as possible (don't just concentrate on OV time as you don't want to take the fun out of it) and stay relaxed!

    Have a read of this too: endometriosis-uk.org/endome...

    Your symptons all sound very similar to mine, but there can be a number of reasons for any of them so I would push for another laparoscopy if I were you. If you want answers quicker, could you go down the private route?

    Here are some of the symptoms I was getting:

    Fatigue, feeling low/mild depression, pain during and after intercourse, pressure pains on my cervix (particularly when moving from a standing to sitting position), shooting pains down the inside of my left leg, constant pelvic pain and lower back pain, pain passing urine and pain during bowel movements (whenever I mentioned this to the doc I was tested for urine infection, but I know what a urine infection feels like and it's not the same pain), loss of old blood (brown discharge) in the week before my period & light headedness (although I'm not sure this is linked - this has prompted me to ask another question!)

    PM me if you have any questions. I am here to support where possible and would love to know how you get on with your next appointment.

    Take care, love K x

  • Hi, you finally got the diagnosis you deserve, si sorry it took you so long, we should go with out Instinct regarding our bodies, but like you say we do and should be able to believe what the professionals say,

    Are you being seen at a bsge specialist centre??

    If you are not and you get any further issues that you believe to be your endometreosis, I would suggest a refferal asap, general gyne often miss endometreosis in certain areas and only look at the reproductive system,

    Good luck with trying to conceive and don't give up if that's what you won't,


  • Hi @Tboag. Thank you for taking the time to read my post : )

    I totally agree, a woman's instinct is an amazing gift we all seem to have and we should definitely go with it!

    May I ask what a BSGE specialist centre is? It's not something I have heard of before so I think you are about to teach me something.

    Thanks, K x

  • Bsge specialist centre is a endometreosis centre, surgeons that work from these centres have much more experience in locating endo in all locations where as general gyne tend to miss endo in certain locations as they tend to look at the reproductive system and stop there. They also gave completed a 2 year course on excision and general gyne often use burning technique, these centres can be in hospital s, there is a list of accredited centres at bsge website, find your local one, and if anything comes up in future get a refferal to a bsge centre, now you gave a diagnosis of endo you are entitled to be seen at one, good luck

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