6 weeks post lap and Bilateral Salpingo Oophorectomy returning pain?

[Sandygirl6697]

Apologies in advance for the long post but I’m feeling very unsettled.

I am nearly 6 weeks post lap which included removal of ovaries and tubes. My consultant came to see me whilst I was still in recovery to tell me that he had found my ovaries were completely stuck to my pelvic area by endo and he had to remove a lot of endometrial deposits. He said that after this removal I would be pain free and wouldn’t need any further treatment apart from taking HRT. He arranged a follow up appointment for last Saturday where he said he would tell me more about his findings.

I did notice a big difference in my pain levels straight away, the lower back pain (along with a feeling of constant pressure on my back) had gone, along with the pelvic pain. For the next few weeks I recovered well. I was looking forward to the future and then to my appointment with consultant, but 4 weeks after the op I started to have pain in my lower back again but just on right hand side going into hip and towards the front and down my leg. Surely this can’t be related to Endo can it after I have been told it has all been removed 😕 and wouldn’t need any further treatment. Before the op i always felt the need to urinate quite often and had to go quickly. This has also returned with a vengeance. I had also had blood in my urine for several months.

I had several questions I wanted to ask, particular about the future but a few days before the appointment the hospital rang to say my consultant was not available for the foreseeable future so I would be seeing another Gynaecologist Consultant. I was disappointed but still thought I would get some answers. How wrong was I. He told me he was only seeing me to prescribe HRT. I asked if he would tell me about the operation, he just said “you had endometriosis on your ovaries, but will be ok now”. I told him I had some pain returning but he just avoided talking about that. I asked for copy of the report and he said he couldn’t give it to me but my gps surgery might be able to. I asked if I would have another follow up , he replied that no he was just seeing me to do the HRT and discharge me.

Could this pain be related to recovery from the op, I’m not sure as I had been pain free for a few weeks (apart for the obvious post surgery pain) ? Has anyone else experienced pain coming back this quick?

Thanks in advance for any information or help.

[Avourneen]

The thing is ops don't always work. But having said that you are probably too early in the healing process to know. The first couple of periods are horrifically painful (not sure if you had hysterectomy please discount that if you have. It took me about a year to feel healed and i still have pain though it's about 10 percent of what it was, but when I was worried about ongoing pain my consultant did meet with me to resassure me. He could even just talk to you over the phone, I think that hiding from you and sending someone else who just brushes off your concerns is not on.

I'm taking it the was an NHS op ? Maybe you should contact PALS and complain very strongly that you are still in pain and the pain is worsening not improving. Try to push really hard for some help and if they are no use complain and then see someone privately. When I said I was still in pain I was sent straight in for another ultrasound (from outside) to check there was no bleeding etc. It will be at least 6 months before you are properly healed and pain can. continue all that time. Another possibilty is that you might have nerve damage, but either way you should have someone check you over and you shouldn't accept being fobbed off.

It's horrible to have the added stress of complaining etc when you still feel very delicate but do it on line and in writing and be insistent. It's the only way to get anywhere. I really hope you feel better soon. XX

[Sandygirl6697 in reply to Avourneen]

Thank you so much. Just having someone who has been through the same to talk to really helps. This condition is such a lonely one.

The op was an NHS one yes. I was beginning to think I was just having “phantom “ pain but as I was expecting a proper follow up was going to ask all the questions about what it could mean and if it was normal but to no avail and the alternative consultant wasn’t interested. I haven’t even been given my HRT prescription yet as he has to write to my gp to get this prescribed . I understand that I wasn’t his patient but as I have heard so many times on others posts on here, I was just fobbed off. I don’t think any of us are given the enough advice for after treatment and are left on our own. If only they would follow us up accordingly it would be so much better.

I just had ovaries and tubes removed, is this what you had done? Someone from my family advised me to contact PALS but I wasn’t sure if I should. My consultant is not available for the foreseeable future, not sure if this is due to illness so my first route I think will be to visit gp if pain continues, it’s definitely getting worse again which is really upsetting 😢.

I hope you are doing ok thank you very much for taking the time to reply to my post. I will definitely be taking your advice.

Take care xx

[Avourneen in reply to Sandygirl6697]

No problem, write anytime. Yes it is scary feeling alone with endo, it can be really overwhelming. No I had a frozen pelvis and everything pretty much glued together and then quite a lot of endo in the bowel too. I had the pelvic mess unglued but they didn't remove any organs so I still have ovaries etc. I think though seeing as I also have adenomysiosis the endo was really bad they should probably have taken the womb and ovaries out.The also left all the bowel endo in which is causing me problems now. At least if they have taken you ovaries out statistically it is far less likely to come back.

I went private for this op (previous one was NHS but they only ablated and didn't cut any endo out) so I received good after care but I think that as he was private the surgeon did about half of what he should have with the thought of another lucrative operation in mind. This is the problem with the NHS it is harder to complain and demand quality care but if you go priavtely it's hard to tell if there is a financial motive to treat.

It could also be something like a little bleeding inside or something not having healed right. I would call back and say you are increasing pain, you are not happy with the way you have been treated and you think you are not being taken seriously. Tell them you are contacting pals and the GMC. I think you will have to be a pain in their ass to get any help.

But it's important to get checked. I'm not sure the GP will be able to help but if you explain how bad it is they might do. Perhaps your GP can contact them and explain that you really aren't well ? I think if you have been referred to a specialist you can contact them again directly. If you can't get anywhere find a good local priavte gynae and get an appt with him/her.

Good luck xx

[Sandygirl6697]

You have certainly been through the mill bless you and it does mean a lot to be able to talk this through. I hope you get further help that you need without having to pay for further treatment.

Those are my thoughts exactly on trying private route, are they looking for another pay check or are they truly genuine. Job to know who to trust and where to go as they are the experts and we just have to believe what we are told. I will now have to be referred again if my gp thinks I need to be seen as the consultant told me he was discharging me from the care of the hospital but I will definitely be contacting PALS for advice. In the meantime perhaps I need to give my body more time to heal like you say statistically with having ovaries removed there should be less chance of Endo coming back. I just want to make sure that when he was performing to laparoscopy that he did check for further Endo in other areas. I am going to try to get a copy of the report as so in the dark regarding the findings. It’s our bodies why can’t they tell us the full details .

I will contact my gp tomorrow, hopefully they will give me some help . Thank you very much again for your help and guidance.

Enjoy the rest of the bank holiday xx