To cut a very long story short. I have had significant pelvic pain with bowel and bladder issues for 2.5 years. It was difficult to get a diagnosis. I was told at first it was a bowel issue, then Endometriosis/Adenomyosis and was eventually diagnosed with 4 fibroids, 1 being 7cm. A year ago, I was put on Prostap and add back hrt. The Prostap helped initially but once I added the hrt, my pain levels rsmped up massively and I was in some sort of flare. I eventually stopped the hrt and the pain did decline a bit.
I eventually had a hysterectomy 12 weeks ago. Initially, the pain went straight away. It has been amazing. However, as I had my ovaries removed, my menopausal symptoms were awful. I started hrt a few weeks ago and now the original pain is back and feels exactly like it did last year when I was on hrt. I am wondering if I do have Endometriosis and it has been missed, as what ever this is seems to react to Estrogen. I have had a laparoscopy and mri scan. The histology from the hysterectomy came back normal.
I am devastated and just don't know what to do next 🥺
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Mindfullness4791
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Hi I am sorry about your pain. I have endometriosis and I have pain everyday. I use super drug's period pain tablets, yes unfortunately large amounts, but it works if I take it as the pain starts and I have endo pain free days. What I wanted to say is that being on HRT, I am using one hormone hrt. My consultant suggested that I use hrt without the estrogen and it also helped my pain by stopping my period, although it's back. I wonder if you discussed with your doctor to consider one hormone HRT isnted of combined HRT. It might be the combination of hormones on HRT causing your pain by triggering something? Something to explore. With best, L x
Thank you. I'm on Estradiol (Estrogen only) as I don't need progesterone due to not having a womb. I'm sorry to hear you are in so much pain. Pelvic pain is debilitating. I use Naproxen, Paracetamol and Co-dydramol.I'm just gutted after having such a major op and being pain free for nearly 3 months x
I don’t have any suggestions for you but I’m in the same situation, I had a hysterectomy about 4 months ago and like you I was pain free afterwards, however I’m now getting flare ups of the same pain I had pre op.
My Gynae warned me this could happen as a hysterectomy doesn’t guarantee a cure for pain of unknown origin, I had fibroids and cysts so was hoping once gone that would be it but seems not.
Oh, no. I'm so sorry to gear this. It is so gutting, isn't it. Are you on hrt? Have you spoken to anyone? I've been to the gp and emailed the consultants secretary x
I’m on topical oestrogen cream, when I saw my surgeon at 8 weeks I was doing really well but since then it’s crept back, seeing her again in a couple of months but I already know there’s not much she can do as the cause is unknown and she did warn me this could happen. It’s so disappointing although on the upside I have got rid of troublesome fibroids and cysts !
Sorry you’re struggling. are you on combined HRT? My consultant said I must be on combined because the progesterone keeps the endo at bay. GPs don’t always seem to know this (I had to explain this to mine) and will try to give oestrogen only because traditionally the progesterone is to protect the uterus. I’m still not pain free and 6 months post op but things are better than before. Good luck x
Thank you. They said I haven't got Endo, following my lap and mri, but my lap was a joke. They even missed 4 fibroids. So I'm not sure what to believe. I'm having lower pelvic and leg pain. I'm sorry to hear you're not pain free I was for pain free for a good few weeks. I just can't believe I'm back here again xx
have you considered the fact that you may have developed adhesions that are causing your pain? And Asians are basically invisible to MRI and CT scan but can act like a glue or straight jacket in the system, causing significant pain.
You may want to complete a medical history form at clearpassage.com and let us at least look at your history and see if we can give you some ants as to whether adhesions are the cause of your pain. If your physicians performed endometriosis, it is hard to believe that you have it, and no one ever mentioned it.
I am NOT soliciting your business. We will give you a free review of your history, and if it appears to be adhesions, we will let you know that we may be able to help.
I trust this post is alowed and taken in the kind way I have presented it. we are so sorry you are in pain and wish you well.
I apologize about the typos above due to dictation. If your physicians performed the surgeries you have noted and no one ever mentioned endometriosis. It would be very unusual that you would have endometriosis.
Yeah, I've had the same problems with the moderators. Tried to help people, then got told to take my post down because I was violating the guidelines by posting non-NHS resources.... It made me so mad.
We rarely take down sources of information unless it comes from a reliable source or contains incorrect information. Generally we use sources of information that contains evidence based information. We also have to follow guidelines set by Healthunlocked themselves aswell as the Pelvic Pain Support Network.
bless you!! What a night mare!!! It’s interesting how you reacted badly to Estrigen, as I have pessaries to insert twice a week, and every time I did, the pain and discharge was horrible!! So I stopped them. I was feeling really good in April as I had a week pain free!!! But the pain is bad again through no changes I’ve made. I’ve been referred for a Caudell epidural, and I’m scared to be hopeful. I really hope you get some answers and feel like a normal person again.As I do for myself xx
Thank you so much for your reply. I'm so sorry to hear you are suffering too. Its a nightmare the pain returning, after such major surgery. I've stopped the estrogen pessaries now. Wishing you all the best. What diagnosis do you have? X
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