Hi all, So I got diagnosed with endo by scan last year. I have PCOS as well, diagnosed years ago. I'm waiting for a follow-up appointment with a gynae. I would like to know whether all these problems are all connected to my endo or could they be due to anything else?
I've never been able to use tampons. Inserting them has always caused me vaginal pain, which I think has got worse over the years, although I've only tried tampons a few times because I found them so difficult. I gave up on them pretty quickly.
I started to get painful sex in in my mid 20s. I am currently not sexually active and haven't been since my late 20s (mid 30s now). However, I read somewhere that endo causes painful sex afterwards and not at the beginning/during? My problem was that (sorry if this is TMI), the insertion was incredibly painful. It felt like being stabbed by a hot knife at times. That's the only way I can describe it. It got worse during the course of my last relationship. It got to a point where I couldn't have sex anymore and it definitely contributed to the break-up of my last relationship. I have felt since then that I don't ever want to have sex again (although there are some other factors in my decision about this).
I just wondered if anyone can relate to any of this and if it's all endo related or could there be anything else going on?
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snowflakemidnight
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I’m so sorry you’re feeling that way! I have both conditions as well and had the same issues as you, but my stomach pain was the worst.
My endo didn’t show on scans or MRI so I had a laparoscopy and it was burned/cut out at the same time. That’s apparently the gold standard when it comes to treatments as it helps with the symptoms, so I would consider speaking to your Gynae about it! Hope you find some answers soon x
Thank you for your reply. It's comforting to hear from someone who has had some similar issues. I get some stomach pain too. 🙁 Hopefully the gynae will recommend a lap and that will sort things. I suppose because I've had some pain since I was really young, it's hard to imagine that I ever won't have it. x
I have had these types of issues and my recent MRI scan has shown that I have developed adenomyosis which basically the disease has penetrated the uterus wall and the uterus starts to expand.
I also have several fibroids which are also adding to the symptoms.
I would recommend you to speak to your gyne consultant and ask about your last scan and explain all your current symptoms.
They may require a new recent MRI to be done but that way you will get to the bottom of your current issues.
I have the same issues with sex too,
It hurts and at times same as you are describing caused alot of pain and discomfort.
Your partner should have been more understanding and supportive.
As my husbands understands the issues around this disease and if we feel it's not right and I'm in pain we just stop.
I'm sorry you are feeling this way and not had the right support from the sounds of it.
It's hard and nit easy to deal with the pain caused by the endro,
Thank you for your reply. I have wondered about adenomyosis - I guess I will just have to wait to see if they think I have that too. They didn't spot any fibroids when I had ultrasounds (when they found an endometrioma). I've not had an MRI yet though. I still need to have a consultation with a gynae. I've been on the waiting list since December. I've already chased it once and they confirmed I'm on the list, but I think I will do so again as it's been so long.
You are very lucky with your husband. There were other reasons why we broke up too, but it certainly contributed. It really affected my mental health. For ages, I was convinced the problem was all psychological, as I thought I just had vaginisimus. I had no idea at that point I had endometriosis as I'd been diagnosed with PCOS not long before so I figured that must be all I had. I thought if there were something else physically wrong with me, the doctors would have said then. Sometimes I do wonder how different things might have been if I had just got the diagnosis for endo when I got the PCOS one, about 14 years ago.
I'm rambling, but anyway, thank you for your kind comment.
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