I had a full hysterectomy back in July including ovaries. The endo had also spread to my bowel. Although I wasn't told specifically, the surgeon said my op went well and so I assumed that all the endo had been removed. The past week or so I've been getting some familiar pains back in my lower stomach/pelvic area and sex has started to cause me pain after again. I'm so worried (and gutted) that the endo could be returning after taking such drastic measures.. anyone else had any experience of this? Thanks in advance
Bonnie
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Freddie20620
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Hi Bonnie, I'm so sorry to hear this. How horrible for you. Did they do anything to the bowel endo? If not, could it be the bowel endo that is causing the pain? I'm afraid I'm only at the beginning of my journey so I can't offer any personal advice, but I'm considering the full hysterectomy option. I hope you find some help and the pain eases.
Hi Freddie, I’ve been in Stage 4 and in words of my new surgeon ‘out of this world category’ since 2016 confirmed and for around 15 years prior being ignored. I was operated on in 2019 but the surgeon was not qualified or trained and closed me after 33mins due to his lack of skill. I was this bad. I’ve been waiting ever since and was getting a total hysterectomy. I had bowel Endo DIE and this would have been at a shaving stage in 2019. However, in Jan 2020 my MRI showed 5mm and by May 2021 on HRT etc it had grown to 10mm. I was informed two weeks ago I need a stoma at least temporarily and possibly permanently due to the growth on the bowl and my frozen pelvis.
As yet I don’t have experience with hysterectomy but I do know we should never leave our bowel health or Gynae health in the hands of one doctor ever! If you think it and feel it get checked and push hard.
My friend had surgery and was told she couldn’t possibly still be in pain. That was 10 months ago…. She had her coil out and still in Endo agony! Now they are saying it’s all in her head and she needs ‘therapy’. She hates being ill, hates being in pain while doing her very physical job or looking after her girls. So, how could she be making the pain up, more intense or localised!! She’s getting a specialist Ultrasound Privately, I got my MRI privately. Albeit I had to save the £400 as it’s not cheap but it was worth it, just to know.
I hope they hear you, and you get relief. There’s nothing worse that suffering a massive surgery and pain to not be free from pain or be able to enjoy life.
How awful for your friend, like this disease isn't bad enough she's having to contend with being accused of making it up?! Tbh I'm expecting to be told that I can't be having endo pain 6 months after a hysterectomy but I know the pain,I know what it is.
Question about the MRI you had... were the MRI results given to you by the place you had it done? And if so, do the NHS consultants take the results into account, I'm thinking of booking a private MRI if I can't get one on the NHS but I'm worried that the consultants will dismiss it and make me wait for one on the NHS...
Yes, I went to a place called Kingsbridge in NI. Anywhere that’s a private hospital or similar will provide MRI results that other consultants have to accept, also if you require medico legal MRI they are more in-depth but this has to be asked for prior to getting the MRI.
So, I emailed Kingsbridge and they passed me to the imaging department and then I was provide with a comprehensive cost. £400 per area or £1800 approx for entire body. At most usually we only require pelvis or pelvic-abdo mri.
I paid for a private GP consult to ‘refer’ me to private MRI in the same building. It cost me £89 and it was literally a little chat at why I wanted an MRI and what I wanted to achieve from it. [Here in NI we can’t have private without GP referral and if your NHS GP says no, you either can’t or you must get a private GP to agree, this may be different where you are]
I own my results, including disk and because it’s done privately but still related to your health, it must be inserted into your medical file by your own doctors.
If I hadn’t my own consultant would never have divulged how bad my endometriosis actually was… for some reason NHS are so restrictive on true prevention methods. Had I had an MRI back in 2015 then we’d see the true progression path, had my idiotic surgeon carried out an MRI prior to my first surgery there would have been a surgical plan and I would have had treatment.. instead I now have to lose my bowel and they will use covid now as there excuse for it getting so bad.. even though they themselves caused it.
Apologies, makes me so angry that women are suffering like this and not being adequately treated, without having to resort to extra measures.
100% recommend a private MRI and or a specialist ultrasound- even if this is a basis record just and repeat in 5 years say. If it’s clear and no symptoms.. but if not it helps know where you are and allows you to fight.
Yes. I had my hyster and ovaries out done by a general gynae who should never had touched me as I had severe rectovaginal endometriosis and he left it there as thought endo would die off without ovaries but unfortunately it doesn’t and the fact he put me on oestrogen only hrt made it worse. He should have stopped operating and referred me onto a bsge centre and as you had endo affecting your bowel you should have been referred to a bsge centre and if this surgeon wasn’t working at one he should have stopped. I’ve since had 3 ops at bsge centre for the remaining endo and deep infiltrating endo as it just kept getting worse despite thorough excision. Think I’ve finally found balance of combined hrt and pain killers.
The surgeon knew the endo was affecting my bowel- she actually called me to give me my MRI results. They did have a bowel specialist in theatre aswell but she said it all went to plan so I've just assumed that they managed to get rid of all the remaining endo.. 🤷♀️
Hi! I had a full hysterectomy in July too and mine was also a joint procedure with bowel surgeon as they had prepped me a possible stoma (fortunately wasn't needed). I too was told the op was successful but I was still dazed from op and didn't ask any questions. I was discharged the next day with no follow up. I'm getting alot of bowel related pain and bleed after every bowel action! My GP has referred me back to them but from experience probably won't get seen for ages. Do u have a follow up appt?? Rubbish ain't it?!
Hi Bonnie, sorry you’re experiencing pain again. I don’t think they can ever be certain that they’ve removed all endo. Have you been put on oestrogen only HRT? If you have that can cause a flare up of any remaining endo. You need to be on progesterone HRT too to suppress it but a lot of doctors don’t know this.
I've been on HRT since July straight after my hysterectomy, all I know is that I was pain-free for a good few months and then in November I've started getting pains again. I just think me being on HRT isn't a good idea because of the estrogen but then,on the flip side I can't NOT have HRT. Rock and a hard place
I’ve been on HRT since July too. I’ve still got permanent pain in my abdomen and pelvis but the back and hip pain (which I thought was linked to endo has just about gone). I realise now that the joint pain was down to low oestrogen. Also, the progesterone part of HRT can cause constipation and I think that makes my pain worse. Are you on separate oestrogen and progesterone? The reason I ask is that I take the body identical progesterone tablet/capsule called Utrogestan and I’ve read that some women are advised to take a higher dose to help with endo. I take the standard 100mg daily at the moment but some women take 200 or 300. This might be worth looking into.
My heart hurts for you that you are in pain. If Endo lesions are left behind, even if it’s super tiny, it can still grow. I have had this disease for over 2 decades. I’m now 43. I also had a full hysterectomy and both ovaries removed back in 2014. Since then I have had to have a foot of my colon removed due to Endo wrapping around it. For the past 5 years I have had increasing pain on my left side where my ovary would be. Some ultrasounds say it has blood flow like an ovary but others say it’s just a small mass. I feel like I have the flu daily, constant back pain, chronic fatigue, and even gum issues. I am researching more to find answers. A few things have somewhat kept my pain at bay.
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