Could this be endo?

Hi all,

I'm new to these forums and wondering if some of you could help. I'm 23 years old and have been on the contraceptive pill since I was 18 due to very painful periods. These started soon after I got my period at age 15. The cramps were unresponsive to any over-the-counter pain medications so I was taking Nurofen Plus every month. This was good however, I needed to take it regularly as the pain relief didn't seem to last more than 2-3 hours. The cramps also resulted in me having to take days off school and such because after taking the Nurofen, I'd be too tired/drowsy to be very functional anyway. After going on the contraceptive pill, I noticed a big improvement. Most months the pain is now minor and generally requires little in the way of pain relief. So all was going well until...

Fast forward to mid last year when I got together with my current partner. I was not sexually active prior to meeting him. One day, a month or two into this aspect of our relationship, I got this pretty painful cramp in my pelvic/lower abdominal area during the uphill part (for lack of a better description :p) of foreplay. I also had this weird feeling in the same area before/after going to the toilet. I went to the doctor and he said it was probably a UTI (however I didn't have any symptoms of burning, etc) and put me on antibiotics. The symptoms seemed to disappear after a few days. The second time I got similar symptoms he said it could be a "soft muscle cramp" issue as the urine test didn't show any infection and put me on tablets for that. It seemed like it got better for about 2-3 months then they happened again. I went back and purchased the same cramp tablets and it cleared up again.

Now, last night I was with my partner and got this really severe pain in the same region, again during foreplay. This time it seemed to last a lot longer and happened as I was approaching climax. I feel really bad as it ruined the mood and he was also concerned that he did something wrong to cause the pain. I assured him he didn't but I'm really worried if this becomes a common feature of our relationship. I also get the same weird pain sometimes in the middle of the night and they wake me up. At times, this is also combined with bleeding or weird discharge (sorry if TMI). I'm thinking that all of the above could be attributed to endo but I wanted to get some other opinions.

Thanks in advance and sorry for the long post. :)

Hi there. Welcome to the forums!

Just a quick question after reading your story, have doctors tested you for PCOS? Because it sounds very similar to what i experience.

Possibly - alot of women with endo experience pain during intercourse and climax. This can be caused by adhesions, etc acting on the ligaments and muscles associated with climax and penetration.
Many women with endo have severe pain as you describe - your story could be mine - everything's similar - the school stuff, etc. But that said, some women can have active endo without symptoms.
I would get a referal to a gynae and get it sorted sooner rather than later.

Thanks for your replies. I'm not sure about PCOS as I'm quite small and have clear skin. I am using Rogaine atm though, but I thought it was unrelated. This is a bit of a dilemma now :doh:

I don't have every symptom of PCOS. I don't have acne or a great deal of excessive hair. There are so many different types of PCOS. But i think you should speak to your doctor or better yet see a gyno.

Yep, I'm making an appointment at the endo clinic at Freemason's Hospital tomorrow. Also, forgot to add that before going on the pill, the gyno I saw recommended I have an ultrasound to check up on things and it came back normal. Not sure if that changes anything. Was over 5 years ago though

I had an ultrasound when i was 19 after having my appendix out, i was still having pain in that area 6 weeks after the surgery and i should have been all healed. The lady overlooked my ovaries and she measured them and she said they were normal size and we both really healthy. Then when i started to have problems i had another ultrasound which was 18 months later and my left ovary has lots of cysts and my right has a few and my ovaries are larger than normal so in 18 months my ovaries turned poly cystic.

So i would say alot has changed in 5 years.

Endo is not detected by ultrasound - the virtual only way to confirm is by sight - via laparoscopy. An US should show ovarian cysts though.

Thanks girls. I've made an appointment to see Dr Luk Rombauts in Richmond next Monday. Hopefully, will be able to clear things up then :)

Good luck! :)

I have both endo and pco (only one ovary is poly cystic) and the pain you described is what i had. however, having said that my gyn also checked to make sure i didnt have PID (pelvic inflammatory disease) - so maybe ask about that too....and as a PP advised, endo will only every be found via laparoscopy :)

Good luck with appt!

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Endo is not detected by ultrasound

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Although this is generally true, my endo was effectively picked up by u/s - they discovered one of the ovaries was 'fixed' to the pelvic wall, and indicated that was likely to be endo adhesions. They were right - this was then confirmed by lap and the adhesion / endoremoved.

Oh, did anybody read this exciting article the other day???
Simple test to detect endometriosis

I didn't, but have read it now and that is great news. Makes it alot easier for women to find out if they have the condition. I just hope they can come up with some kind of cure for both of the conditions, one that doesnt involve having to have a hysterectomy.

Oh, did anybody read this exciting article the other day???
Simple test to detect endometriosis[/QUOTE]

Great article, hopefully it will help drs diagnose endo more quickly (took 7 years for them to find out what was wrong with me!)

Just another question - did your gynos ask any awkward questions regarding intimacy with your partners or anything like that? Never spoken to a doctor about that kind of stuff before so feel a bit nervous

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Just another question - did your gynos ask any awkward questions regarding intimacy with your partners or anything like that? Never spoken to a doctor about that kind of stuff before so feel a bit nervous

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yeah my gyn wanted to know if intercourse was painful and did it get worse or better as "the act" progressed.

hth!

Hi Cimborn :hello:

It sounds to me like it could be endometriosis. I experienced the same symptoms and pain you are experiencing, I especially felt my pain in my lower left pelvic area (around the area of my left ovary). I had intense period pain and cramping and this pain would continue throughout my entire cycle. Other symptoms I experienced was pain with bowel movements, pain with intercourse, painful urination and a feeling like I have a full bladder most of the time, lower back pain and tiredness/fatigue even after just an hour of getting up in the mornings.

I went from doctor to doctor and when I was finally sent to my current (and wonderful gynae) after nearly a year of tests (it fellt like I had every test and scan on earth but nothing showed up, except for a 4.6cm hemorrhagic ovarian cyst (left side) but the cyst eventually ruptured, however the pain continued.

It took almost a year before finally finding a gynaecologist who listened to me (and believe me that the pain was not just in my head!!) and was willing to do a laparoscopy and in 2007, I was diagnosed with endo.

The only way to diagnose endometriosis at this stage is to have a laparoscopy as no ultrasound (pelvic or abdominal), CT-scan, MRI or any other tests are able to diagnose endometriosis.

I continued to have problems with my bowels after my surgery for the endometriosis and after having some tests run by my doctor, I was diagnosed with IBS in December 2007.

I would say you're moving in the right direction by seeing the gynae on Monday. I hope that you find answers to your questions soon and that if you do have endo, that your gynae will be able to treat it for you during surgery and that you'll feel like your normal self again soon! I know all too well how horrible the pain that comes with having endo feels - my periods have been becoming unbearable again the past few months, so I am wondering whether it could be that my endo has come back, but thankfully I've got a preconception checkup with my gynae in 2 weeks and will be asking him about it then.

Take care and good luck Monday and let us know how you go at your appointment. :hug:

PS: Yes, my gynae also asked me about pain during intercourse and even asked which positions I did that hurt the most etc... I'll tell you what a good friend of mine told me when I got embarrassed about my visits to my gynae. She said just remember that although it might be akward, that it's part of their job and that by telling them everything and by being honest with them is what helps them help you get better. ;)

Thanks so much Pretzel. The only thing is that I'm currently on the contraceptive pill which is helping with my period pain a lot. It's mainly the other pains that I've described that are the issue. Although I'm not going to be on the pill indefinitely, so would still need to deal with that I guess. Just hope I'm not seen as overreacting.

Hello again Cimbom,

You're very welcome! :hug: I'm glad to hear that the pill is at least helping with your period pain. Have you ever tried to take the pill continuously for a few months non-stop to see how that is for you? That is what my gynae recommended for me, but I had to go off the pill due to migraines and high blood pressure problems so unfortunately I haven't been on the pill since last September and I'm guessing that's why my periods have become so horrific again.

I would recommend that before you think of taking your pill continuously though that you discuss it with your gynae.

Do you have any plans to TTC anytime soon? (If you don't mind me asking). The reason that I am asking is because if you are, make sure to tell your gynae when you see him on Monday.

All the best and good luck. Let me know how you go. ;)

Yep, that's what I'm doing atm. I take the sugar pills every 3-4 months so it works out well. Not TTC for a few years at least I think, as me and my partner are still studying (we're both 23). Will let you know how it goes on Monday. Thanks again :)