To cut a very long story short. I'm 50 had a full hysterectomy (including ovaries) in February and was put on Oestrogel 8 weeks later. I was told I needed to wait due to blood clot risk. I really suffered
Unfortunately my pelvic pain returned and my gynae diagnosed me with Endometriosis. My hysterectomy was for Adenomyosis and large fibroids. She took me off of Estrogel and started me on Tibolone. This worked slightly but I still had anxiety, skin rashes and generally not feeling great.
In September I saw a menopause specialist who switched me to Lenzetto and Progesterone. I have felt so awful that I've stopped this and now on Estrogel and Progesterone pessarues . My anxiety is still through the roof.
After my hysterectomy I started a new job, which was my dream job. I've now had to leave as I do not feel physically or mentally able to carry on. My pains are deep and down my legs and the bowel/bladder issues are ramping up and the rectal bleeding is back. I had a sigmoid recently that showed no abnormalities
I've never felt so scared, vulnerable and alone. This is following 3 years of crohnic pelvic pain. Ive had an mri and lap that were negative for endo. I'm waiting to see a bsge specialist but I'm scared they won't find anything :(((
I just don't know what to do. xx
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Mindfullness4791
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Hi, I am so sorry about the the pain you are experiencing. Have you ever seen a pelvic health physiotherapist? If all scan came back negative, it could well be a problem with your pelvic floor muscle (overactive). This causes a lot of pain and urinary symptoms that can be mistaken with bladder and rectal issues. The cause can be stress, endometriosis attaching to pelvic nerves, neuropathy and many more. A pelvic health physio will be able to check if your pelvic floor is malfunctioning.
Thank you so much for your reply. It is definitely something to consider. I do feel as though my issues are exacerbated by estrogen and I have had a lifetime of painful/heavy periods.
I'm so so sorry to hear how desperate this must be..for your anxiety have the doctors considered prozac or any anxiety meds ..it sounds very complex but if you can get your anxiety under control then you can tackle the pain issue..the only experience I have is with hrt I was on everel conti for years it made me feel wonderful ..I had a prolapse repair anterior and posterier and as they found thickening of my uterus although couldn't find anything my gynie suggested everel sequi...unfortunately it gave me breast pain so I had to come off it....I don't know what to suggest re your pain apart from in my experience if anxiety takes control the pain seems worse...I hope you get help...there must be someone who can help surely...Good luck lots of hugs jeanette x
Thanks so much time for your reply. I am already on 2 anti-depressant/anxiety meds, as I have a history of generalised anxiety disorder. I am seeing my gp in a couple of weeks, so will discuss my options then x
Oh My Goodness! So sorry for your suffering. I hate to say it, but it sounds like what I went through 35 years ago, at the tender age of 31 - TAH/BSO.
1) If you have endometriosis - no estrogen and no progesterone. You just had your ovaries removed (among other) and that was causing your endometriosis to build up each month, then bleed in to your abdomen. It is not easy to go "cold turkey" - no hormones, but that is what is causing the "internal bleeding" and perhaps rectal bleeding. The endometrial cysts and implants return to "cycling" with artificial hormones. The docs told me I would have a heart attack, lose my gallbladder and have osteoporosis if I did not take them with my early TAH/BSO - but I am 67 next month - and fine. Eat right, exercise, take vitamin D and calcium.
2) Do not expect the pain to go away immediately. Your existing endometrial implants (if not physically removed via surgery), will take time to atrophy (from lack of hormones) and reabsorb in your body. This can cause scarring and adhesion. Try to stretch and keep mobile as much as possible during this time. (More on this later). To this day I am angry that my surgeon removed my organs (TAH/BSO) but did not take the time to remove the large and obvious endometrial implants. Those do not go away - easily or right away.
3) I know it is destroying your career to take time off, but if you cannot work - it is because you are still ill. People with cancer are given grace while ill. I hope you can go back to work in a year and just explain you had surgery and then it took time to recover. You cannot will away illness.
4). If you pain does not improve after say 9 months OFF all hormones - you may need to have the remaining implants removed via a laparoscopy. I had 2 post TAH/BSO. Find an endo specialist - who will know where to look.
If your pain is much better after 9 months, I find that topical estrogen cream in the urethral and vaginal area are NEEDED to maintain tissue health. I use a pea size dab - twice a week - of estrogen cream. Without a uterus there is no need for progestrone (medically). I do use a progestrone cream (small amount) on my arms about twice a month to maintain skin health.
After the long recovery, I was able to return to work. With myofascial release to manage the adhesions caused by the endometrial cysts and surgical adhesions. I still do as much yoga as I can to get my posture (changed by cringing in pain) back to normal. It is a long recovery - but I am nearly pain free and my heart, bones and gallbladder are fine. It has been 35 years but my life is good!
I wish you all the best - but take the time to health your body - just as if you had a "serious" (that is a crock - endo is VERY serious if not life threatening) disease. YOU CAN recover - it just takes time and persistance.
Thank you, so, so much for your detailed and very helpful reply. I am so sorry to hear that you went through the same. You are right that I need to take time to heal. I have been mistreated really badly by the nhs and have just submitted a complaint. I am now waiting to see a bsge specialist. I will print off your post, as there is a lot of really good advice. Thanks again 😊 xx
Sadly having a hysterectomy doesn’t always cure the problem and in my case the pelvic pain is worse since the op. My gynae can find nothing wrong, I’m using a topical oestrogen, I’ve seen pelvic health physio and I’m now doing Pilates with a specialist physio instructor to keep pelvic floor in order but still the pain persists. I can’t offer anything helpful but just to say it’s a common problem.
your journey sounds extremely similar to my own, however I made a choice to stop all anxiety medication and stress to my Gp that this was a physical problem which needed to be dealt with especially after numerous a&e admissions.
I was under someone whom claimed to be one of the best BsGE surgeons in the country world (blowing his own trumpet). Said all laps scan etc were clear. On seeking a second opinion completely out of area with the support of my Gp I saw another excellent BSGE surgeon whom really knew his stuff. His intial instincts were correct ovarian remnants! He carried out all the necessary tests to ensure he only needed to carry out one surgery and even on waking up his words were he could see I was no longer in pain….,, All the opioid stopped instantly and haven’t been taken since. I no longer need antidepressants, yes. I have tinges but then I’ve had multiple surgeries and scarring. I am on a hrt implant and have estrogren vaginally to stop any uti
I'm sorry to hear what you have been through. I just can't believe that so many women are being failed and nothing is being done So the ovary remnants were Endo?
I'm glad to hear you are feeling so much better. It gives me hope xx
I fought so hard the original gynecologist whom claimed to be world class denied it could be ovarian remains or adhesions said it was chronic pain and mental health all in my head. I could do anything work go out ….
I fought so hard with my gp and we broke everything down to when it all started which was with an hysterectomy. We agreed that I needed a second opinion and his advice was out of area if the other gynecologist didn’t find anything we then had to go down a chronic pain route.
Luckily I met the most sincere and caring doctor I have come across listened took everything at my pace as I was a mess. Sent me for test after to test and then surgery. My bowel had adhesions pelvic stuck in places and the remants removed he cleared the whole pelvis.
You know your own body best and what you know is it chronic pain or something causing this ? I was in hospital via a&e twice I was visited by pain teams both saying treat the problem it’s not chronic pain. The other a&e admission said it had an underlying cause not pain.
I personally from experience would seek a second opinion I would go with a dairy ask your gp for full bloodwork including estrogen reading if you have bloods done prior to surgery take them to compare against. Also emphasize your activity level prior to now Try different diets low fod endo diets etc go armed with what you have done take pictures if swelling etc
Hi, I have returned back here to search the forum and spotted your messages on here and the Endometriosis forum too.I wanted to suggest something that is unlikely to be checked by the Gynaecologist unless they send you or you have already had a Defecating Proctogram MRI.
I note you have vaginal and bowel issues and issues after hysterectomy. Nobody is listening, none of your tests are reporting any issues.
I am experiencing similar issues but still have my uterus and never given birth. Had many many pelvic MRI's, CT's and scopes with no results. My Gynaecologist said he believed I had hypertonic pelvic floor, I kind of felt that sounded too simple as he patted me on the back as I left my appointment last June. I told my Gastroenterologist that something else was going on, as I have over the last 5 years as things have just continued to get worse. I made the big decision to pay privately to have a Defecating Proctogram MRI regardless of what was involved is was the only way to look at how my bladder, vagina, bowel / rectum, along with the functioning of my pelvic floor. Looking for weakness, leaking, structure etc.
A few weeks later I had the MRI and now the result that's thrown everything up in the air. It took months and months to get anyone to speak to me, all I kept getting from colorectal, gastroenterology, urology and gynaecology was its not me. Finally just before Christmas, after months and months of my own research, I finally got to discuss my newly diagnosed grade 3 Sigmoidocele. Although nobody has experience of my rare finding. The surgeon told me none of these consultants would have known what to say or do... then why did they not find someone.
All my research, all my thinking there was more going on, folking out money from my savings to pay for an MRI that should have been considered years ago.
A sigmoidocele is literally when your sigmoid has dropped, into the pouch of douglas (routerine pouch, the cul-de-sac, amongst many other names) It is not something that can be diagnosed by standard pelvic MRI, CT, scopes, examination or palpation. They are very rare, I guess because the vast majority of people with pelvic pain just never get put forward for an MRI that involves pelvic floor exercises, straining pelvic exercises, having your rectum then filled with jel, back into the machine and go through the same pelvic floor exercises again, whilst keeping the jel inside your rectum. Finally being asked to defecate all of the jel out. No time for embarrassing moments it just had to be done to get a full understanding of what if anything was going on in all of these areas.
The grading 1 to 3 is based upon how far the sigmoid has dropped through the pouch of douglas from the pubococcygeal line to the lowest loop of the sigmoid(ocele). The pouch of douglas is not there for anything reason it's simply formed due to the nature of the peritoneal covering our lower pelvic organs. It sits in between the uterus and bowel. Yes the pouch of douglas can have issues with endometriosis, ectopic pregnancy, fluid, masses etc.
I had a laparoscopy last weekend, again had to pay privately, just so the colorectal surgeon could have a look at my sigmoidocele, and I guess confirm what the consultant radiologist had diagnosed as a sigmoidocele from the MRI. She has yet to decide how to proceed due to the fact my pouch of douglas now has its own issue. Apparently the right hand side of my pouch of douglas is significantly lower on the right than the left, my sigmoidocele is literally on the right on the lower section. She has never ever seen anything or heard of anything like it.
I see the colorectal surgeon in just over a weeks time. This time in the NHS hospital as I am told surgery will need to take placd there. I am hoping the colorectal surgeon has then had the time to think, discuss and consider what to do next. She has spoken about a lifting within the pelvis and a rectoplexy but told me she was just speaking out opening without full consideration but needed time to think fully.
I am telling you this because women that have had a hysterectomy are more prone to a sigmoidocele. Besides the sigmoid doing this the small bowel can do this too, it is then called an enterocele. It literally goes into an area and pushes further and further down. Affecting both the vagina and bowel or either one. It is considered by some surgeons as hernia.
Bits of advice even if you do not have anything like this. Lie down when you feel the downward pressure. Take stool softeners if constipated, do not strain. Use glycerine suppositories if you cannot empty your bowel properly.
The other thing I had repaired in 2018 was a large hidden right inguinal hernia. My pain and discomfort had been discounted for many years until I was admitted to hospital as an emergency and the then surgeon sent me for a CT scan because he suspected a hernia, despite its size it was not palpable, that's why nobody had ever picked it up. The pain from this was just awful again with downward pain but not the same as I have now, and no bowel issues.
I have Ehlers Danlos and Behcets Disease. I blame the former for the hernias I have and the sigmoidocele I think must figure somewhere here too.
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